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Regular Member

Date Joined Oct 2009
Total Posts : 48
   Posted 10/5/2009 9:18 PM (GMT -7)   
Hi every one, I just joined today.

I'm 22 years old and was diagnosed with fibromyalgia last summer. From learning all the symptoms I've come to the conclusion (along with my doctor) that I've actually been experiencing this since I was 15. My doctor says that I have a pretty active case, the exam that he did to help the diagnosis was putting pressure to the tender points, I learned before hand that 11 out of the 18 is considered fibro, I unfortunately react to all 18 points, the slightest touch is painful. I was glad to finally have an answer to my constant full body pain.

My doctor put me on Lyrica and gave me trazadone (the generic of Desyrel) to help me gain more deep sleep. I couldn't believe the difference that even just one Lyrica made. But now it doesn't seem to be working very much. I'm alot better than I was, and I do have other medical conditions, but recently the Lyrica seems to be doing nothing. My only relief from the pain is from the medical massages I'm now receiving once a week, this has been helping. Though now that the weather is changing and it's starting to get cold everything is worse. The last few days have been agony, I can't do anything, stand, sit, lay down, I hurt all over.

I'm very discouraged, Lyrica doesn't seem to be helping much (i've tried cymbalta and it reacted funny with other medications i take, and i can't take any pain pills stronger than Darvocet because they make me sick) the medical massages only help to an extent, and my sleeping pattern is out of whack again. One of the major problems is that I only have one friend who has fibro and she lives in another state, my family and friends understand that I'm in pain most of the time and do their best to help and support me. It's just hard to talk to people who don't fully and truly understand what it's like to be in full body pain pretty much every day.

I'm hoping that makes sense. It's hard to not have any one to talk to on a regular basis that feels the same way I do. It's worse because I'm young and of course none of my medical conditions show on the outside, I look like a normal healthy 22 year old woman, but I feel more like I'm over 40. When you have people tell you that you're young and you'll be fine and things like that it becomes very frustrating, I know some people don't believe me because physically I look fine, that's when it's really hard.

I'm rambling....didn't mean to do that. I'm really hoping to find people to talk to here, that completely understand the pain I'm in daily.
"Some books are to be tasted, others to be swallowed, and some few to be chewed and digested" - Francis Bacon
"I couldn't repair your brakes, so I made your horn louder" - Unknown

Diagnosed with: ADHD, Raynaud's Syndrome, Fibromyalgia, Asthma, Hypoglycemia, heart murmur, knee caps that are too high, reoccurring kidney stones, multiple food allergies, multiple drug allergies, multiple environmental allergies, possible underlying arthritis

Post Edited (AkinChan) : 10/6/2009 1:45:15 PM (GMT-6)

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 10/5/2009 11:25 PM (GMT -7)   
Hi AkinChan!

And welcome to our Fibro Family! Yes, you make perfect sense. Your story is so familiar, unfortunately. Most people aren't hit by fibro as young as you are but the way yours progressed is pretty normal.

Lyrica seems to have limited use. More and more we are hearing the same story that you have. It works for 1-2 years at most and then it just gives up working. There's not much you can do about it. Do tell your doctor right away because there are other medications that he/she can try.

I'm so glad you came here for some comfort and friendship. This place is what keeps me surviving because of just the reason you stated...because others just don't understand unless they have it. So very true!

Please do join our Koffee Klatch daily and we have Chat Night on Thursday. It will be posted in the forum on Wed. as a reminder. Hope you join us!
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums

Regular Member

Date Joined Sep 2009
Total Posts : 84
   Posted 10/6/2009 1:36 AM (GMT -7)   
I understand that feeling, I've come to really just cringe when people ask me if I feel o.k. most the time it's pointless to try and explain. So more and more I guess I find myself outside looking in. On the days I look and feel like the walking dead I just smile, nod, and say oh every thing will be alright. Lyrica stopped working what seems like so long ago, though it really wasn't even a year ago. I think sometimes I actually wish people could see the "sick" maybe then they would stop asking me if I'm o.k. and most off all quit giving me hugs and sneaking up to massage my back. It's a nice gesture, but the pain is so bad I really wish them to not touch me, and even though I ask nicely they still do it!!

But, now I'm whining or rambling not sure which one ugh most likely it's that need sleep thing.

Welcome, I know I find comfort and friendship here, and I hope you do as well.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 10/6/2009 7:40 AM (GMT -7)   
Hi AkinChan and welcome. I was like you and had no one to talk to about fibro that could understand it before I found this forum, it has been a godsend. This season change has been harder on me than usual for some reason, we have been having quite a few rainy days so that could be it.
My rheumy made a comment a few weeks ago that lyrica hasn't been the miracle drug for fibro that they thought it would be. Some have had and still have great results with it but most people don't seem to stay on it for one reason or another.
I need a massage but I never think about making an app til someone brings it up on here and it takes awhile to get in to get one. I just wrote myself a note to make an app. Do you use heat like a moist heating pad or the bed buddies you can get at drugstores and heat in the microwave??? You can also make your own by taking a long tube sock and filling it with uncooked rice and tying the end shut. My massage showerhead died a couple of weeks ago and I'm now trying my 4th replacement to find one that is as good as the old one was, it had a pulsating massage that was heaven on my back and shoulders, which is my worse places.
You will learn many tricks that we use to make us feel better. Fibromites can be creative when it comes to pain. smilewinkgrin
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 10/6/2009 10:11 AM (GMT -7)   
Hi, Akin, and welcome!  I'm so glad you found us and joined in!  You have gotten the scoop on Lyrica from some other members so I can't add to that.  But, I have never taken it, either.  I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 for my pain and fatigue.  These do help.
I also keep moving.  If you sit or lay too much, you will be stiff as a board.  Do some gentle stretching.  I posted that last night so it's either on the first or second page of the forum.  Also, find a gentle exercise.  Walking is my choice.  I also swim.  Both are great but the walking doesn't cost a cent!  It gets you outside so you can look at the beauty all around you.  If you have incliment weather, get a walking-in-place video.  I have an easy one from Leslie Sansone that is good.  I only do it for 15 minutes and it's equivilent to walking one mile!  Works for me.  turn
Be checking at the top of the forum.  We usually have a thread called Fibro 101 up there but it was lost last week and I have been working on putting it back together.  I'm almost there.  You will find links to good information about fibromyalgia and you will learn a lot.
Don't hesitate to ask questions.  We are here to help you.  I hope to hear more from you 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

Regular Member

Date Joined Oct 2009
Total Posts : 48
   Posted 10/6/2009 11:17 AM (GMT -7)   
Thank you all so much for the welcome. ^^

It's very nice to know that it's not just me that's had problems with the Lyrica. I go to see my rheumatologist today so I'm going to see if there's another medication to try. I have been planning to try to do more exercising, light stuff, but I live about an hour north of LA and we just recently got over several fire that were dumping smoke everywhere, I couldn't go outside without a mask for a good week because that's the one thing that sets my Asthma off, and then of course I got sick. So now I'm determined to be more active. Though one of my favorite things to do is read, so I'm often sitting in one place for a while lost in a book and then I'll get up and be all stiff and sore.

I do use heat on my shoulders and back, my mom has a bean bag that can be heated up in the microwave. The only problem with heat is with my Raynaud's Syndrome my body is usually colder and adding heat makes my blood flow more than normal and sometimes results in swelling, though thankfully it's usually in my hands and feet that happens the most but I do have to be careful to not get too hot, or too cold for that matter.

I hadn't thought of a massage shower head though, I'll have to look around and see what I can find, that sounds like it would be amazing on my shoulders. I don't let much of any one try to massage my shoulders and back, unless I can't stand the pain which I then point to the spot that's killing me and have my mom push though that's usually when my shoulder is pulling so hard that it's giving me a headache the size of the US, otherwise I leave the massages to the massage therapist that I see. And yeah I answer "are you ok" with a shrug and yeah, unless it's a friend or family member and then the answer is often no.

I'm mostly worried about getting my pain to a manageable level before I find a job, I just recently finished a Pharmacy Technician course and got everything I need, it's a job that requires me to be on my feet and moving constantly, which thanks to my ADHD I like to do when I'm not in agony. And I'd also like to be able to keep up with my seven month old puppy, he's so full of energy and I want to be able to chase him around and such without regretting it. I know the pain doesn't go away, it can't be cured, but it's frustrating to be 22 and have to sometimes force myself to do the simplest daily tasks.

I do have a question, I'm not sure if it's the Raynaud's or the fibro, but my fingers and toes often get numb or tingly, is this something that's normal?

I'm happy I found this forum and I'll definitely be around.
"Some books are to be tasted, others to be swallowed, and some few to be chewed and digested" - Francis Bacon
"I couldn't repair your brakes, so I made your horn louder" - Unknown

Diagnosed with: ADHD, Raynaud's Syndrome, Fibromyalgia, Asthma, Hypoglycemia, heart murmur, knee caps that are too high, reoccurring kidney stones, multiple food allergies, multiple drug allergies, multiple environmental allergies, possible underlying arthritis

Post Edited (AkinChan) : 10/6/2009 1:45:04 PM (GMT-6)

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