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CatchMyPain Community and Pain Diary App to manage chronic illness

New w/ Fibro & RLS

Apr 09, 2017 11:42 PM

Hey , I'm new here and hoping this will provide some emotional relief for myself and any other sufferers out there . I , like many of you have tried relentlessly all kinds of RX Drugs trying to find absolutely anything to calm the storm of pain that is fibromyalgia. I was diagnosed back in 11' during the summer before I was set to start college . I was 17 at the time and dealing with the onset of a condition I wished I'd never known . I had very serious fatigue and the pain was dull most of the time . It wasn't until the first semester of my freshman year I had a real flare with little knowledge on what was going on inside my body. The pain was so intense I just stayed in bed and cried . I was in Memphis Ten far away from the city of Seattle in which I was born and raised . I was given pretty strong medicines in the beginning like Vicodin / Hydrocodone but during flares I would go to the ER and they would have no idea how to treat me or most times think I was a drug seeker. I had no knowledge of how dibilitating it was or could get . The stigma surrounding the condition made it even harder to deal with . Up until recent years have they figured out it's not "all in our heads" or psychosomatic as professionals would call it . Fast forward to present I am 24 with a 6 month old and seeing a rheumatologist who has actually helped unlike many others I have seen . Not having consistent medical coverage has been a hinderance in the past and couldn't dream of going without if I can help it . I am now taking Tramadol 50mg a few times a day as my only pain relief coupled with magnesium and iron for my moderate anemia . The list absolutely goes on of things I've tried and tests that have been done before settling on Fibro once again . I'm in Houston Tx these days and have only slightly begun to see hope . I will be seeing a pain specialist soon to see if my meds can be increased to at least 100 mg because after 7 years the pain has gotten more severe or maybe even just worn me down so much it's harder to fight but I haven't given up or lost hope just yet . I never knew what a Guinea Pig felt like or knew what the saying actually meant until now. Constant poking and prodding , X-rays and blood draws and boy am I worn . But there is light because I have come across this app and know that I am not alone in this struggle . So , I say all that to say this don't give up ! Everyday we wake up is another chance to fight , another tiring but winnable battle is ahead and one day soon we will find permanent relief from our ails. Although the cycle seems endless I know there's nothing nature can't cure we just have yet to find it . Hope this makes you all feel comforted in one way or another . Feel free to give me any feedback on what meds have worked for you or any naturopathic or holistic health tips that have gotten you through those seemingly endless flares . Peace , love , and gentle hugs to you all .

Apr 10, 2017 11:54 PM

I'm on a mixture of tizanidine (muscle relaxer) gabapentin (nerve medication) Oxycodone (pain medication) and recently started using Quell. For the most part I can have fairly decent days if I remember to take all my meds. Some days pain is through the roof outta control. I hope you get a good pain management doc. Let us know how the appointment goes!

Apr 12, 2017 9:04 PM

I have had fibro, DDD, fiomusclar cartlige syndrome and a list of other things that I simply don't want to go in to for the last 30+ years. I'm so tired of pain doctors that want to either give me opioids(narcotics don't even touch the pain anymore) or take everything away and start all over with whatever THEY believe will help me. I try to push the pain out of my mind. Which can help until I lay down to sleep. Oh what, what's sleep? Insomnia hits just​about twice a week now along with migraines​ three times a week. But I still try to stay as active as possible daily. Sorry I didn't mean to ramble but I don't have anyone else talk to about this.

Apr 12, 2017 11:22 PM

@tiredofhurting what ways have you stayed active? I used to do cheer, dance, fencing, basketball, hiking etc. I used to love excerise and staying active but these days I find it hard enough to just walk to school and work. I tried dancing the other day because my pain was mild and I'm not suffering the consequences. Any advice?

I'm so sorry everyone has been experiencing pain for so long with little help in relief but I'm so thankful for this app and the community it provides. I wish you all the best and I'll always listen to any venting

Apr 12, 2017 11:55 PM

I just started lyrica beenon gabapentin Celebrex,hydrocodone, methodone,Effexor Cr and fish oil daily gummy w/iron
So far the lyrica is working pretty good. I can't wait to start decreasing the gabapentin and Celebrex and methodone. Not in that order if I can get rid of 3 pills b/c 1 helps yea!!! I just hope it's not short lived. It's only been 3 weeks

Apr 13, 2017 12:45 AM

I try to move as much as I can. I also do stretching off and on during the day when ever I start to get stove up. I keep my mind occupied with wood burning, crochet, embroidery, baking, cooking. Of course I have to take breaks and don't over do it. When I first get up in the morning it takes me at least an hour to really move well but at least I'm able to move even if it's slowly. I'm on Lyrica now and it helps some. I also use lidocaine patches and Voltairn jell. I pray first thing in the morning as soon as I open my eyes and it helps me tolerate the pain till I can push the pain out of mind. You see, I was told that I would be in a wheelchair within five years-that was over 30 years ago. I told that doctor that he didn't know me and I could be pretty stubborn so no wheelchair for me till I'm 100! Some days it's easier than others to put the pain asside but I have too much living to do so unless I am flat on the floor with pain I just press on.

Apr 13, 2017 7:38 AM

I tried Lyrica Cymbalta Gabapentin they all have really weird side affects that didn't make me feel good . I felt really suicidal on them and really spacey and out of it . Having had depressive phases in my life I can't take anything that has those type of effects on me . Wish I could have kept going tho because they did provide some minor relief along with the pain meds it was very manageable just not so much for my headspace . @tiredofhurting please let it out our individual stories help others in more ways than you can imagine and I think in some ways helps us to continue in the fight of chronic illness knowing that we're not alone .

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