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Posted 5/20/2009 4:54 AM (GMT 0)

I'm 21 years and I was diagnosed with fibromyalgia in August of 2008. I also have Chrons disease that was diagnosed when i was in late elementary school. I have been having a lot of issues with my "FMS" such as daily severe pain in my back that migrates into my neck and legs- it's a daily struggle to get out of bed. I also have concentration issues, insomnia, anxiety, lack of motivation and just an overall crappy feel of life.

What I'm currently taking for the fibro:

hydrocodn 7.5 mg twice daily for pain (which doesn't seem to be helping AT ALL)

voltaren gel up to 8 grams daily (to help with minor aches)

zonisamide cap 100mg twice daily (for fibro)

glycopyrrolate tab 1mg twice daily (for sweating)

klonopin 1mg 3 times daily (for stress)

citalopram tab 20 mg (for depression, which doesn't seem to do much)

ropinirole tab .25 mg (for restless legs, which seems to help)

unisom tabs (for when I can't sleep, dr. rx seem to take to long to kick in)

Ive also been on various muscle relaxers that didn't help, lyrica, neurontin (which gave me bad mood swings), flector patch and a lidocaine patch.

I was wondering what types of treatments some of you other members were doing so I could talk with my doctor about pain treatment. (Ive also been reading Fibromyalgia for Dummies that I picked up from Barnes and Nobles- it's helped with my spirits but I need something to help with the pain. Ideas folks?

Oh and what are you stories and how are you coping? Does your partner/spouse understand all of your problems? How has life been with you since you've been diagnosed? (better or worse with treatment)

I am going to start water aerobics, I do hope that helps- and I hope your comments help too. Thanks guys!!! <3

Posted 5/20/2009 6:05 AM (GMT 0)
Welcome, Sahaymes! This is a great place to share, get support, vent, laugh, have acceptance and understanding...Well, you get the idea.........Lots of wonderful people here. I no longer feel so alone and different.
The Fibromyalgia 101 link second from the top of this site is terrific for information. A really good read.
I went to water aerobics when it was available to me and found it very helpful. I've been doing some of the stretches, too, and I am less stiff than I was. Some folks like cold packs, but personally I find heat much more effective. In fact, I usually go through the roof with cold. I use a homemade bed buddy for the moist heat it provides. Everyone has some differences in their needs and what works for them, but some things seem to be fairly useful for most fibromites. I'm sure that between the FMS link above and suggestions from others on the forum, you will find several things that work for you. Keep posting when you can! This is a caring bunch of people, and though I'm relatively new to the forum, I feel at home here. You will, too!
Shash
Posted 5/20/2009 6:22 AM (GMT 0)

Thanks Shash- I also find heating pads to work well or extremely hot baths to be helpful. I'm glad I now I have found a "family" to associate with because I don't know anyone with fibro, unfortunately....or fortunately!

(:- sahaymes.

Posted 5/20/2009 2:50 PM (GMT 0)

Hi, and welcome!  I'm sorry you are having this illness...especially at your age, but I have had it for 22 years and have had a full and enjoyable life with fibro.

I use ibuprofen with food and extra strength Tylenol for pain.  I use malic acic/magnesium supplements for pain and fatigue.  Many with fibro are deficient in these nutrients.  Also, there are quite a few with fibro that are deficient in vitamin D.  I am one of them.  I live in Florida and with all of the sun I get you wouldn't think I would have that problem.  I presently am taking 3,500 IU of vitamin D3 a day to try to get me in the normal range.  Vitamin D deficiency can cause pain and fatigue also.

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibro...including a link all about malic acid/magnesium supplements and how they work in the body.  It's worth asking your doctor about. 

I have pain all of the time but it is under control and I'm able to live my life the way I want.  I do have to pace myself, though.  I can't keep the same time frame as I did before fibro.

It's easy to make the homemade Bed Buddy.  Take a tube sock, fill it 2/3's full of raw long grain rice, and tie a knot at the end.  Pop it in the microwave and it will give off moist heat due to the moisture in the rice.

I'm so glad that you found us and joined in.  Read back posts and ask questions.  We are here to help you.  I hope to hear more from you soon.

Sherrine

 

Posted 5/20/2009 3:01 PM (GMT 0)
Hi Sahaymes and welcome to the family. We have other members that have both fibro and crohns and I'm sure they will be around to give you advice too. Heat is my best friend in any form, wet or dry. I don't know why but when I'm in a lot of pain I seem to be cold no matter what the temp is. I found out awhile back my vit D is pretty low and since I have been on supplements I seem to have a little more energy and motivation. I'm excited to see when I get it up to close to normal how I will feel. Can't say it has helped the pain, actually with the extra activities I have had more pain. I take amitriptyline 100 mg at bedtime, which I kinda proved to myself this time last year does help with the pain some, 4000 mg of tylenol and xanax as needed for anxiety and it does help my body to relax. I'm suppose to be trying neurontin but I haven't started it yet. Some have had great results with malic acid/magnesium combo, my tummy doesn't allow me to take it. I have not taken narcotics but that is a personal choice of mine.

 

I'm glad you found us you will find the people on here are very helpful.

 

luv and hugs

Marlee

Posted 5/21/2009 12:37 AM (GMT 0)
Thanks for the advice on malic acid/magnesium. I work at Sephora (gotta love that makeup) and a lot of our skin care products have malic acid! A side from that, I fluctuate often in my weight, have high blood pressure which I'm taking atenlol for, and I'm taking iron for anemia. (I'm more than likely deficient in a lot of vitamins as well). In the back of my Fibromyalgia for Dummies book I found a handy chart that listed some medicines for anxiety, depression, pain relievers, and so on. My fibro doctor has my on hydrocodne 7.5 mg and I always complain that I STILL have pain. Severe pain- and yet he tells me that this medicine will only make fibromyalgia worse. (Doesn't it occur to him to perhaps give me something else- or is my age just screaming abuse of pain killing medicines?) Ideas or thoughts?
Posted 5/21/2009 3:06 AM (GMT 0)
Welcome sahaymes,
I'm an RN who has had fibro since I was your age. I'm now 53 and was forced to retire after 4 cervical spinal surgeries. I also take hydrocodone 7.5 and I get very little relief from it either. I've tried many other meds but nothing has seemed to truly talk the pain away. This is a funny disease.......the fibro fogs can make you look like an idiot but you just have to roll with it because it's not going away. I also have a problem with my weight. The doc just upped my Neurontin big time and I gained 15 lbs. in 7 days! I have now gained 25 lbs and can get into nothing that I had to wear last summer. That is depressing to say the least as I had gotten thin and bought several new things last year. I refuse to go buy more clothes until I see what other med changes they are going to make. There are good times and bad but you learn to live with the pain. If there were a day I didn't have pain I would think that there was something terribly wrong. Anyway, you can get a lot of good info from others or just write and vent when you're having a bad day. Good luck! You can still have a wonderful life...it's all in how you let it control you.
Nurse2
Posted 5/21/2009 3:21 AM (GMT 0)
I'm sorry to hear that nurse2! I was on Neurontin 100mg 3x daily and I stopped it cold turkey because it gave me the most horrible mood swings. I would slur my words and feel like I was sleep walking. It's unfortunate that you've gained weight! I seem to keep loosing weight. All my pants just fall off and everyone jokes I'm going to have to shop in the little kids department. hah.
Posted 5/21/2009 9:21 PM (GMT 0)
I have Crohn's disease and fibro, also.  As I said before, I use Ibuprofen and Tylenol for pain.  I have pain all of the time but it is under control.  Very few people with fibro can manage to be pain-free.  We all would love it but it usually doesn't happen...at least for any length of time.  The goal is to get the pain under control. 

 

Having Crohn's is a problem because we might not be absorbing nutrients and pills, for that matter!  My doctor checks my blood all of the time to see what is happening and if the medication is helping me.

Sherrine

Posted 5/22/2009 2:03 AM (GMT 0)
Welcome to the forum! Glad you found us!

Not to be a downer, but I take morphine for my fibro and I still am in pain and have to take percocet for "break through pain". I see a pain doc and it just seems like he keeps upping my drugs and my pain never goes away. We would all be better off to try exercise, stretches, yoga and more positive visualization.....instead of heading down the road I am on..... b/c once you are on narcotics it is hard to slow down or get off, even when you want to! Dont be fooled, there isnt a drug that will take away the pain...only make it a little dull. But it comes with a BIG price.
Posted 5/27/2009 4:41 AM (GMT 0)
Thanks for all the responses. They've helped so far. My other half is dealing harshly with what hand him and I have been dealt because when we first started dating, I didn't have as many problems.

Well- I'm off tonight because tomorrow is a new day and a new doctor who should hopefully help me dramatically.

Posted 6/4/2009 1:12 AM (GMT 0)
You can make a heat pack easily.

1) Find an old towel
2) fold towel in half and sew up the sides, leaving a 3-4 inch hole
3) fill with cheap dry rice and close hole
4) microwave your brand new rice pack for a moist heat


umm ... i would also reccomend finding some fuzzy or cuddly blankets and pillows and maybe a foam mattress pad.
doing stretching throughout the day seems to help me ... otherwise i end up with joints that go all snap, krackle, and pop Rice Krispy style on me. I am also lucky enough to be able to lay down throughout the day ... an hour or so of rest every 3 hours seems to be the right formula for me.
Posted 6/8/2009 7:17 AM (GMT 0)
Yes, heat and hot baths have done amazing for my pain. Thanks for the responses!
Posted 6/10/2009 2:28 AM (GMT 0)
I am also 21 years old, and I was diagnosed around the same time you were. I am on:

Hydrocodone 5/500 4 times daily (though sometimes I take more)

Lyrica

Tetracycline (for acne)

Luvox (for depression)

Trazodone (for insomnia)

Flexeril (muscle relaxer)

Meclizone (for when I get dizzy)

Fioricet (for migraines)

Unfortunately, I don't have much advice for you when it comes to dealing with this illness because I am still having a really hard time dealing with it myself. I can tell you that I am here if you need someone your own age to talk to. I find that a great way to help with my depression is to come on here and talk with people who understand what I am going through. It helps to know that I am not the only person with this illness. The people on this board are great. They are so supportive, and they just really care. They offer advice when they can, and they always offer support. You are not alone.

I do find that taking hot baths or lying with a heating pad on my back helps with some of the pain. Also, try not to overdo it. I tend to do it a lot because I strive to live like I did before my fibro kicked into overdrive. If you overdo things, then you are going to suffer for it. Believe me on that one. Rest when you need to. Try to get as much sleep as you can. Walking may be painful, but it is necessary. It helps keep your muscles strong, and it doesn't hurt too much if you don't walk too much, and if you do it at least once a day.

I hope this helps. Good luck to you. My e-mail addy is available if you ever want to talk through e-mail.

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