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Hello everyone. My name is Amber and I have just been diagnosed with fibro. I had a feeling for a while that I may have had this condition because of all my other problems. I suffer from back and neck injuries from a car accident I was in several years ago. It gives me headaches and prevents me from doing normal day activities. I also suffer from a bowel disease called mastocytic enterocolitis as well as IBS. I also suffer from Bipolar disorder/General Anxiety Disorder with panic attacks and mania. I find that the mental state of mine is a lot harder to deal with then the pain. I don't know if this is common with fibro peoples...I can honestly say I am not in pain everyday but I suffer from my mental state. I am having a very hard time finding a doctor that wants to help me and is available instead of just drugging me all of the time...Did I mention I am only 26? I am currently on:

Zantax 150mg 2x a day (for masto)

Zyrtec 10mg 1x a day (for masto)

Tramodal 50mg 2x a day (fibro)

Xanax .50 3x a day (for anxiety but due to insomnia I take all 3 at night to help me sleep, so I lack anxiety control throughout the day)

Flexeral 10mg? 1x a day(fibro)

Abilify 2mg 1x a day (anxiety)

I used to be on Ambien for sleep and other medications but they made me ill or walk in circles repeating the same phrase over and over again. Crazy huh?! I feel so alone...anyone else out there? My eyes shake a lot too *like spasm?* as well as lack of appetite and weight loss.

Amber

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dealing with all this at a young age can b hard. i got my dx around the same age. at first i was horriable and didnt handle the pain very well. it wasnt till after i starting see a phycolighst that i was able to cope better. before seeing him i was living an xanax caue the pain caused alot of anixety. i can now cope better and i no longer take the zanax. at times i do wish i had it but for the most part i can cope with the pain. the counsel i saw was a specialist in seeing patients with chronic pain. i learned alot of ways to deal with pain w/o drugs. thats not to say i all pain can be controled this way but i am able to get over some issues. i can share them with u if u like.

if u dont already see a rhumy dr than i would if u can. they should be able to perscribe medes that will help and not leaving u feeling like a zombie. finding the right meds for fibro requires alot of trial and error. i really hope u can find the right meds and the right dr. seeing a counsler has been one of the best thing i have ever done. if u dont like your drs than ask around and find new ones. i am not sure how close u r to where Robin the monitor is look on her page and if u r close than she could help u with finding good drs.

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I too am new diagnosed. I suffer from the pain daily. I wake up with it and go to sleep with it. I am a lot like you...bi-polar here along with IBS. I also have a weak bladder. I know exactly what your going through with the mental state. I'm going through this as well. Its the reason I joined this site. I wanted to find out how people dealt with the mental anguish this syndrome causes. With the bi-polar I obsessively think about the dx. I feel like" Oh crap this is what i have to look forward too...a life of chronic pain...lucky me. When I start thinking like this I realize i'm doing the "stinking thinking". I know that we need to stay positive but its really hard.

Anyways if you ever need to vent please message me. Since we are both newly dx we can go through this together.

Take care

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I was diagnosed with fibro around 44 but I had IBS issues, GERD, allergic asthma and such long before that. I was just diagnosed with Ehlers Danlos Syndrome at 46 too. It has a lot of the same symptoms as fibro. EDS is a genetic connective tissue disorder that causes the body to make weak collagen. Since collagen is everywhere, it can affect ust about any where in the body. Somebody asked me how I could have something like that and not know it but I had never heard of it before and many medical professionals know very little about EDS. I have the hypermobility type and the EDS is likely what caused fibro for me. I've always had it, I just didn't know. The older I got, the more symptoms popped up though. I know how it feels to feel awful and not know what's causing the problems. I hope your pain is eased some. Gabapentin is what works for me but I know it doesn't work the same for everyone. Have a good week.

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Hi and welcome, glad your here.

A couple of thoughts that may oar may not be useful.I am from Australia so I’m not sure about your meds we often have different names for them here. When you described your eyes like a spasm, that could be something called an oculogyric crises which is a side effect of neuroleptic or anti psychotic meds. it might be worth checking out. I am a retired psych nurse, things may have changed, but also you are not on Lithium yet bipolar? Maybe there is a very good reason for that.There are some programs on line that may help with anxiety disorder. You may need to do a search but it could help.

I hope that you get to feel better soon. Cheers Barb

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We are out here for you. I know the mental stuff is awful. I have been in the psychiatric hospital three times and am currently on paxil 60mg a day and zoloft 150 mg a day with klonopin 1mg twice a day. I am on lots of other stuff for fibro and bad rheumatoid arthritis that I was born with. You are young to suffer so much but I know the pain as I have had it all my life. You are NOT crazy or alone. Pain and mental illness combined can make you feel alone. They lie to you like demons. I think if you could go to some support groups-get out of the house-that would help the mental stuff which would help the physical stuff. Your eyes shaking could be fibro or a side effect of ability. As far as the doctor situation, I know it is almost impossible to see a psychiatrist. They see you for five minutes! The other thing to do is educate yourself as much as u can on all the illnesses you have. Maybe your insurance has a health coach you can speak with.

But know you are not alone. Not crazy. You are ill and deserve proper health care and support

Maria

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Gentle hugs!! I’m 31 and I’m roughly a year past my official diagnosis. We’re all here to help and support you :slight_smile:

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Welcome. I know that tramadol interacts with so many drugs including xanax and possibly your abilify. I am on cymbalta and lyrica. I have scoliosis in three different spots. I would research any medication interactions. I thought abilifyy was to enhance any anti depressing or anti psychotic? Maybe its time for a new Dr. I recently started seeing a trauma specialized therapist and I like her I also like my general Dr. He LISTENS hard to find that. Sometimes we have to be our own health advocates. Talk to us here too I have learned a lot from these beautiful people. Good luck.

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hi xx big warm hugs xx iam 8 months into my diagnosis , x being on this forum will help you alot ,everyone are helpful and always here to chat , tc love angie xx

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Welcome araine, and thanks for posting, this is the quickest way to start to get to know everyone! This is a great group of people, and we talk about everything and hold each other together! There are over 40 groups to check out when you are ready, and I think that a young person's group is one of them, at least there should be one, if not, you are more than welcome to start one, when you're ready!

There are many of us who got here by way of car accident, they are tough on the body and the nerves! It was the 3rd time being rear ended that kicked this all up for me! I worked with a Psychologist for about 2 years, she helped me get back behind the wheel and to cope with the chronic pain.

This is a good place to come to and make friends who really do understand!

Wishing you well,

SK

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Welcome to the group. I am glad you have been diagnosed, not because I am glad you have fibro (I wish no one had to have it) but because at least now you know what you have and can take steps from there.

I have come across your bowel condition in literature before (I like reading textbooks) and will have to have a read up to refresh myself as to what it is properly (I seem to remember too many mast cells?).

Like you a lot of the problems I have cause both physical and mental problems and the mental ones are by far the most torturous and evil. I have anxiety, depression and self harm issues although the self harm is a lot more under control that it has been. I am now able to manage to realise the warnings my mind is giving about self harm and avert it... first time in 10 years I have managed with it, yet thoughts and desires are here every day and they never leave me alone.

Hope you get along well here. If you want to message me or anything then feel free... I always enjoying chatting and trying to help with things xx

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Hi Amber, WARM WELCOME !!
I am so glad you have introduced yourself !! This is a great way to make friends and learn you are not alone!
Just glancing over your Meds your really not on anything for fibro… Like Lyrica, Savella, Cymbalta …
Finding the right dr is very important !! Someone that is willing to help you.
I’m not a dr.( I’m a nurse, so I’m much smarter… Lol) But I am familiar with your meds, the Abilify is a very low dose, can you talk to your dr. About increasing it ? Also Cymbalta would work great with the Abilify to help manage the anxiet, pain and mental anguish … Just a suggestion
Have you tried anything else for sleep, when you use Xanax for sleep it can cause a whole lot of other problems, I would see if you could try Another sleep aid, & use the Xanax for the day time, since you don’t take it now for daytime anxiety… Perhaps you could cutback on that one ???
Magnesium is great for anxiety, and adding that to your list can’t hurt.
We do have to be our own advocates… I’m just really surprised with your history That you are only on 2 mg of Abilify … This could all be managed much better with adding a SSRI or SNRI ( Cymbalta )
If you can find a counseling place that has a psychiatric nurse practitioner… This may be a good route for ya, have you ever heard of trileptal ? Adding this to your Abilify could make the world of difference for you, but a regular MD is just not very understanding of brain chemistry.
I don’t usually suggest meds to anyone , but I have been researching this for the past two months, and I have a friend that is a psychiatric dr and she has been educating me on your exact diagnoses.
I am so glad you have joined us !!! So many are dx with fibro after having been in a car accident … Every time I read that it just gets my brain spinning… There is def a connection there !!!
Hugs & blessings
dee

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Actually, I was on 5mg of Abilify and it caused me to be jittery and have a nervous breakdown. I was on other sleep meds as well as trileptal, allergic as well as to Celexa, Soma, Scelaxin and a few others. They wont put me on Cybalta. I am seeing a Nurse Practictioner who is trying to get me into a BETTER phsychologist bec she just keeps drugging me. The Rhuem doc wont put me on the fibro meds until she feels I need to be bec Im allergic to so much stuff and I am managing the pain at the level I am at right now. I talk to a counselor on a every other week basis. Still going crazy I am. I see a new phsyc doc next wed...hopefully this will help cause this is actually putting me on the verge of disabling me.

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I know exactly how you feel and you are not alone. I am 24 years old and I know exactly how you feel, I was diagnosed with fibro about a year and a half ago. It started with joint pain in my wrists, hands, and fingers and has progressed to all over joint and muscle pain. I get muscles spasms in my back. There are days I can barely walk and have a cane which sucks but I don't really have a choice. I also have really bad fibro fog, am losing both my short and long term memory, and am starting to forget the name of common objects and forget what I am talking about mid-sentence.

I also have Addison's disease, endometriosis, Celiac disease, hypothyroidism, raynauds syndrome, asthma, acid reflux, Bipolar disorder, major depression, ADHD, and sleep issues. I have been sick my whole life, with everything really going downhill when I turned 18 and it has just been one thing after another. I have been told numerous times that it is all in my head and that it is all psychological. You will feel at times that you are going crazy, but that is normal and a lot of us feel that way, I know I do.

I take:

Hydrocortisone 15 mg (Addison's disease)

Niphedipine 30 mg (Raynaud's disease)

Effexor 150 mg + 75 mg = 225mg (Depression)

Lamictal 200 mg (Bipolar)

Trazadone 200 mg (Sleep)

Omeprazole 20 mg (Acid Reflux)

Phentanyl patch 50 mcg (Pain patch for fibro)

Lupron Injection 11.25 mg every 3 months for endometriosis (Puts me into a medical menopause which gives me hot flashes and those are never fun...did I mention I am only 24)

I have both my appendix and gallbladder out...which is good I guess because now I don't have to worry about it. I do have to go get an MRCP to see if my bile duct is obstructed because I have been having sharp pain in my upper right quadrant of my abdomen. I haven't been able to work for over a year, am waiting to hear if I am approved for disability. I have been in college off and on for over 6 years and still do not have my bachelor's degree since I have had to take off almost 2 years from my studies. I live at home with my parents and have to depend on them financially as well as for emotional support. There are days I cry and cry and feel completely hopeless and I wonder what happened to my life and how did I end up here.

I am going to be writing a book called "Too Young To Be This Sick" and I want to tell the world my story and share other stories as well and make more people aware of this growing epidemic. I plan to also write about the numerous doctors that I have seen on this never ending journey who either thought this was in my head, jump to the conclusion that I am a drug seeker and how I have been discriminated and denied the care that I really need. I want people to understand how serious of an issue this is. Anyways I was wondering if you would be interested in sharing your story with me and include it in my book? You can message me on here and we can talk and we can collaborate together and share your story to people.

People our age should never have to suffer this. We are so young and our lives should not have to be this painful, we should be out there chasing our dreams.

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Welcome to the group I joined this group a couple months ago an the friends I have here I feel like they are like family to me .they take time from their life an pain to be there for me an I’am here for them an anyone else who needs a good friend .i understand your pain life is hard enough without us having to live with this fibro. I’am here to talk sometimes you feel better just being able to talk about how ur feeling sending you hugs melissa

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I feel the same way...I am 34 and WAAAYYY too young to feel this bad MOST of the time! I have customers in their 70's-90's that feel a lot better than I do most days! I hate feeling like this! I wish I had a doctor that understands and could give me SOMETHING for relief!!! I haven't had relief since last year when I had to stop seeing the doctor that diagnosed me because he messed my left arm up...so I have that to deal with on top of the Fibro now! Hopefully I see this "new-to-me" doctor April 1st and he can help me!!! Take care and I hope the book does well for you....and us! :)

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First of all, welcome! I'm glad you have found our group. I think you will find encouragement and tangible ideas that can help.

What a heavy load you are carrying. I'm so sorry you are going through this!

I also have spinal injuries - from top to bottom of the spine. It causes neural pain rather than muscular pain. I take gabapentin for the spinal pain, plus clonazepam for the irritated nerve caused by cervical injury. Neither one of these has made me a "daytime zombie". The difference when I first took gabapentin to address the spinal pain was dramatic.. Have you asked the doctor about dealing with neural pain for your spine?

I tried tramadol, but the instructions say not to drive while one it, and I am always having to drive to doctors and the pharmacy. Tramadol left me with such a case of med-head that no way would I drive on it! I told my doctor about the effect it was having, and he stopped prescribing it. He changed the med, and my brain has returned!

I see everything but neural pain reliever here. Maybe it would be worth asking about?

Warm, gentle hugs,

Susan (Scribelle)