Hi everyone -- I've been a chronic painer for 27 years now, and my doc told me today I also have Fibro. It seems like he could have told me a long time ago, cause I asked him why I had so much pain -- then I said "Could I possibly have Fibro?" And he said "Oh you have that for sure." Umm, gee doc, why didn't you say so before?

Now I know why my head hurts all the darn time, why I can't remember anything, why the pain has gotten so bad that nothing seems to work anymore, yadayadayada!!

These darn doctors. Why all the secrets? Did he think I was going to jump out the window? I'd only fall 2 feet.

Anyway -- just saying HELLO to all, and hope everyone is having a decent day! Hugs, Lee

Hi Leesa, Im mads from UK. Ive been a chronic painer forover 8 years due to radiotherapy damage. Have suddenly developed peripheral polyneuropathy symptoms or could be fibro, MS - just sort of hit me new years eve. How did your symptoms start and what are they exactly. Mine are so many and keep changing- tuesday i couldnt coordinate my right leg or arm, today my leg feels easier but the burning has turned to total dead numbness. Im so frightened. Its the cramps and pain that kills me. None of my usual meds will touch it.... and im real use to pain! Getting a definitive diagnosis is so difficult.
Must be a relief in one way to know, but again you must feel anger and frustration at having waited, stressed and truly suffering for so long. You start to question yourself dont you. Is it in your head - especially when tests keep coming back negative. Have they given you meds now? what is prognosis - will it get easier for you?

My thoughts are with you

God bless
x

Hi Mads, and thanks for your kind words. My problems started in 1986 after my first spinal surgery. I've had problems ever since -- plus the 2nd surgery in 1995 didn't help matters. Both surgeries were failures besides and i've been in agony since.

I also have peripheral neuropathy, particularly in the legs. The burning is intense, but is pretty much under control with meds. I WAS doing very well with pain by taking OpanaER, but then that even lost it's effectiveness and the pain began getting worse. So today my doctor put me on Norco 10/300 for breakthru -- which is a joke since I'm TERRIBLY hard to medicate. I'm the kind that wakes up on the operating room table during surgery under GENERAL anesthesia!!! And it's hard to tell anyone you're awake when you're laying on your FACE because they've given you curare so you can't move during surgery! I've done that twice in the operating room, and once with the oral surgeon when he put me out to "dig out" 6 teeth!!! So if my doc thinks Norco 10/300 is going to work, he's NUTS. LOL

Anyway, the diagnosis of Fibro answers a lot of questions I had about why I had brain fog, had trouble swallowing, why the pain was so intense, and a myriad of other questions.

Again, thanks for your reply. I'm sure I'll learn alot here. God bless & take care. Hugs, Lee

Hello again dear friend. May I call you friend as i feel an infinity with your energy and what you have briefly told of your story. Cant believe our stories are so similar Leesa. Im a breast cancer survivor too, had bone mets in left hip which is how they damaged me in first place with over radiation/radical treatment- and not monitoring me. Depression - was suicidal last year 2011-2012 - thanks to a fab therapist im really getting grounded and all the depression stuff is at least better understood. A lot of it was anger, loss, emotional pain and the result of my partner being a functioning binge alcoholic. The years of abuse from such a wonderful man(when well) and my ill health, battle with cancer, chronic pain just brought me to my knees with mental breakdown. As i said im a chronic painer now for over 8 years but here in uk they use totally different drugs. Like you im hard to medicate - have very high tolerance level. Ive never woken up in surgery though... oh my god Leesa - you poor thing... thats horrific... barbaric! (HUG). Ive had stufff done awake just under local..... didnt feel it as such.. but yugh the fact you can hear them discussing it and almost watch.... not so nice. Im waiting to be diagnosed now. Think its PN or fibro as i said in last message. Neuro doesnt know. Thats why i asked what your symptoms were and whether the damn thing moves throughout your body... feet to legs and now my arm and face right side. Aplogies for typing but arm numb and im right handed. Think ill get myself that dragon voice program to type for me if this 'thing' doesnt improve.
No longer living with partner. He is really lost to the drink at moment. Dont know how he is hanging onto his job. I joined a support group for wives/family AA Al Anon who told me to stop facilitating. Loving him so much i thought i was helping him. Now im here, i totally love and adore him , he is my soulmate but i can not nor will i be with him until he is 'well'. I have to look after myself now - well tyhats what all the medical team keep telling me. Put myself first. Thats not easy when you are a helper and giver is it?

I ve been through a gamma of meds in past but I wanted to share the meds that they currently give me in UK for my longstanding chronic pain. methadone for pain(yes- horrid stuff), oxycodone for breakthrough, naxproxen , topiramate, pregabalin plus the rest...sleepers, antidepressant, antisickness
etc.....

For these new symptoms which hit me new years eve i have been given nothing!. Oh- thats because they dont know what is. My foggy brain is dire. I now have to write everything down or save a copy so i remember. Im real frightened Leesa, really frightened.

What they have given you is helping you you say? Is it nerve blocker? what else do you take?

Im new to this site- only a week. It is so helpful but also confusing - so many different experiences and symptoms. All of us seem to share one thing - difficulty in getting diagnosed.

I even found a site with people same experiences as us who think it may be spiritual enlightenment.... to do with kundalini energy etc.... Hmmmmm I dont know. What do you think? Really anything is possible.

Well, you are in my thoughts and prayers . Wishing you a more comfortable day today - painfree we never are, but 'more comfortable' sometimes.

God bless

x

Hi dear Mads ~ Of course we are friends! I too think we have a lot in common!

Those that told you that you can't keep enabling your partner were right. HE has to learn to stand on his own 2 feet, without someone tripping the land-mines for him. Alcoholics never faced responsibility in their lives - they always had someone else there to do things for them. They can't live life on life's terms so they turn to alcohol. They're in pain, emotionally/spiritually -- and until they surrender totally, they'll never get well. They have to get sober for THEM -- no one else. No amount of begging, pleading, screaming, crying, etc., is going to get them to stop drinking. Until they lose everything -- their jobs, family, car, home, money -- until everything is gone, they'll keep drinking. All you can do is pray they don't die before the miracle happens. I'm glad you got away from him. You need to have a life AWAY from that!!! It's toxic for you.

As far as meds, I'm on OpanaER, 40mg twice a day, Lyrica 75mg twice a day, Topamax 200mg twice a day, Cymbalta 60mg twice a day and he just put me on Norco 10/300 for breakthru pain (HAH -- this will NEVER work) LOL

Personally, I don't believe our pain has anything to do with "spiritual enlightenment." I'm sorry, but our pain receptors have gone awry -- once they begin getting signals in they keep sending pain signals out whether there's pain or not! I'm not saying we DON'T have legitimate pain but for instance, lets say that some miraculous day they cure me (tehee) -- I would bet that I'd still have the same pain because the pain receptors can't stop sending the pain signals.

I've had every single procedure done that a pain specialist can do, including the burning of nerves to try to "kill" them temporarily cause they grow back. I've even had the Spinal Cord Stimulator implant, but it had to be removed cause the idiots didn't take into consideration how small I was - and the darn thing started working itself OUT of me. I didn't have enough "fat" content in my body -- so they had to remove the whole ball of wax. LOL Now there's scar tissue in my upper back that drives me nuts.

And foggy brain?? Good grief. Since I'm a recovering alcoholic (almost 20 yrs sober) I pickled my brain from all my drinking, and now I have foggy brain? Have you ever talked to anyone with a foggy pickle? DUH

I'm so glad you found us --- I also go to the sister site of this one - -- Psych Central. That's a GREAT one, and much busier than this one. It's great for mental health issues. It's www.psychcentral.com I'm a community liason officer there. But you'll like it there too.

Anyway -- I'm glad you found this place. These two sites are about the ONLY places I go to. I hope we talk more. You can private message me too. Hugs, Lee

Hello my friend,
Thanks ill try Psychcentral. Certainly will talk more. I shall see you there and i shall message you too. Nice to have a connection with someone who just understands isnt it. Big hug from cold rainy england. Its 9.45 pm. Another long friday night lol!

God Bless x

I don't wanna troll this forum, like many others like me have done, but I think its my duty to let people know that several Chronic Pain and Fibro Diagnosis are wrong and were actually caused by Severe Side Effects to Fluoroquinolone Antibiotics, Avelox, Cipro, Levaquin.

I would check if you had that shortly before your symptoms first started.

Good luck to all

Leesa There is a blood test that can be taken now to see if you have fibro. Also the pain points on your body should be tested. Just because you are in pain doesn't mean you have fibro. You really need to be tested for it.