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#591729 - 11/01/07 06:35 AM
Re: fbromyalgia
[Re: ROSE22]
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missvictory
Member
Registered: 11/10/04
Posts: 117
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Hi Rose! Yes, this is long overdue...thank you for starting this thread. I am a long-time fibro sufferer; tested positive in 15 out of 18 identifiable tender points about ten years ago, when I didn't even know what he was pushing around to find. I had been tested for Lupus, MS, and other conditions, before being diagnosed with fibromyalgia.
You are right, it stinks! It is a very real condition and I applaud medical practitioners who treat it as such. My pain this year is at an all-time high, and my fibro-fog is worse than ever!
My husband tries to understand what I am going through, but short of running a nightly hot bath which he is convinced will cure me, he just has no clue, God bless him. It is difficult for him to comprehend that fatigue, depression, memory problems, etc. are also symptoms of this. I work long hours, so the fatigue is a crusher for me.
Do you have a good support system? What symptoms bother you the most? Wishing you a good day today!
Warm Regards,
Victory
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#591954 - 11/01/07 11:04 AM
Re: Fibromyalgia
[Re: missvictory]
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ROSE22
Board Addict
Registered: 01/16/07
Posts: 312
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i am in a nightmare right now with pain and hopelesness.
there is not one doctor i have enocountered who thins this is a real disease and needs real attention. not one!
i have to use a cane just to get the point across.
i am so happy this thread will bring us together! now we just need to find a source of quality health care.
they will never undestand until they have the disease themsleves. it is sad but true.
the new doc told me to take antidepressant and go to a shrink,THAT WILL MAKE THE PAIN GO AWAY--- RIGHT PEOPLE!
SORRY BUT IBUPROFEN DOES NOT TOUCH THE PAIN OF THIS DISEASE.
i have lokked and looked for a doctor in my state that has the knowledge that opiods are efficient in treating chronic pain. they want to give me shots or operate,but i wont let them. i know my body and i know where the pain is. IT IS ALL OVER. how are they gonna give me shots all over or operate all over????
the total lack of disregard for the pain associated with fibro is humiliating and depressing.
i will provide some links to valuable websites with tons of info at another time.
my biggest objective at this time is to find ONE doc to treat the pain! JUST ONE! I SHOULDNT HAVE TO DRIVE 3 HOURS FOR RELIEF! NO ONE SHOULD!
what is wrong with the health care community nowadays??
the pain in my legs is what bothers me the most. it never stops. sadly i do not have a good support system and it has led to a deterioration of my personaltiy. my whole person has completely changed since i was in a car accident.
i hope one day to get my old self back, but that might be a pipe dream 
what about you guys? hopefully one of us has things going good! or atleast i would like to think that!
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#592353 - 11/02/07 04:09 AM
Re: Fibromyalgia
[Re: lindaford56]
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ROSE22
Board Addict
Registered: 01/16/07
Posts: 312
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as promised here are some links that not only have tons of info pertaining to the disease and how to find help.
co-cure,has a good doctor list for all states.
iw will also include a few forums striclty for fibro too.!
fibro info:
http://www.co-cure.org
http://www.fibromyalgiasupport.com
http://www.partnersagainstpain.com
http://www.med-help.net/fibromyalgia
http://www.fmaware.org
forums:
yahoo-groups/chronic pain and fibromyalgia support
http://www.fibrohugs.com
http://www.ezboard.com/fibromyalgia
http://www.healthboards.com/fibromyalgia
-----------------------------------------------
there is alot of info found in these sites posted above. sadly there is no solid guaratee that the 'ggod doctors' are good. but, it is worth a shot.
i have been looking for along time for a good doctor and i think i found one last nite. i will keep you posted as i make progress with him.!
please let me know if i can help with anyhting. i have been alone during this whole process and i dont want anyone to go thru what i have gone thru,ALONE.
if you live near me , i might be able to direct you to one or 2 docs that will help. and if in st louis there is a hospital called barnes jewish,that has a multi faceted approach towards this disease. meds, counseling, therapies,etc...
dont hesitate to pm me for any other info! blessings and pain free days to you all!
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#596593 - 11/10/07 07:40 PM
Re: Fibromyalgia
[Re: lindaford56]
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warmweather
Board Addict
Registered: 05/20/07
Posts: 350
Loc: Parts Unknown
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hi sorry for your daughter i have had fibro for close to 6 years it when they rule everything out then they say you have it there is nn numbing that is usally neuropathy maybe from pre diabetic but there is no cure for fibro my suggestions to you are number 1 you have to have a memoryfoam mattress a must and the pillows, to you have to get a good night sleep which i take ambien and elevil and tegratol this really helps. sleep is the only thing that will really rejuvinate your body for the next day number 2 swimming is also the best for you,and try to find a combonation of pills to help her i take opana 40mg in the morning and oxycodone for breakthru pain and hydrocodoe for more breakthru only when i need it. fibro is a curse and i hate it but im really used to it by now if i can help with anything please let me know on floyd9665@bellsouth.net thanks linda
You really gave some good suggestions. Restful sleep is number one for just about all conditions. At times we forget about our mattresses and sleeping conditions. I have made sleeping an art form! LOL Seriously, I changed the mattress, bought high quality sheets and bedding, replaced the pillows (I like Martha's K-mart ones), spray lavendar linen spray on the sheets, take long baths right before bed with more aromatherapy, make sure the room is completely uncluttered (more important than you think), and then make sure there is as little light as possible and turn on my noise machine. I sleep like a baby (not mine who woke all night long! lol) and it helps so much.
As there is a strong link between fibro and nerve damage, this should be looked into also. CP can cause nerve damage but there are other causes as well. Additionally, any woman of pre-menopausal or menopausal age should talk to their doctor about HRT. This has really helped so many.
Lyrica, the med most often prescribed for neuropathy, also has helped fibro patients but it's a long haul to get used to it. You really have to start low and increase very slowly. So this will take some time before results are seen. Many give up before then because of the time it takes and the side effects, which can be daunting. I am one who started then quit then finally figured out how to take it and still function normally. I'm glad I did. It is not surprising at all that this med also helps fibro, given the nerve damage link.
Second, I have found that Thai Kratom helps my fibro just so much it's incredible. I recently forgot to order and then ran out. The difference just shocked me. I was almost incapacitated for the few days it took to get my order. Once I did, it was just sweet relief and I even bathed all 3 of our dogs, 2 of which weigh 80 pounds. Two days ago, I wouldn't even think of doing that. You can PM me if you want to learn more about this. I only use pain meds very sparingly now.
_________________________
Here's to the heart, which has a will of its own.
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#604817 - 11/26/07 07:13 AM
Re: Fibromyalgia
[Re: Khilee]
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nico
Banned. Very offensive and rude posts
GRAND Pooh-Bah
Registered: 09/20/05
Posts: 3165
Loc: TURN THE [censored] AROUND
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Hope you get better khilee, come over and I will take care of you 
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#604828 - 11/26/07 07:33 AM
Re: Fibromyalgia
[Re: ROSE22]
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SMagnolia
Member
Registered: 05/15/07
Posts: 119
Loc: GRITS Girls Raised in the So.
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Good Morning Rose,
I'm so sorry for your pain. Your saying everything I'm going thru also...alone, no money for anything but meds online, gas, car insurance and a little food. Can't work any longer hours to afford anything else. I'm living rent free w/ my sister for just 4 more weeks! Should be interesting to see what happends then. I'm a faithful woman...I try to stay positive but I'm sinking emotionally fast and just see no future. Pain, and I am in awe of how many of us on here suffer like I do, pain is so debilitating and I just don't know....can't even imagine what any of us have done to deserve this! I just want to live a normal life...get up in the morning, go to work, put in my 150% like I always did when younger, come home and nurture and love my family and friends....give to my community etc. I've been completely robbed of any life at all for almost 6 years now and I'm sooooo tired of existing! I pray pain free days for all of you, Steely
_________________________
"Steel Magnolia" A Woman may become callous on the outside from life's trying times but she NEVER forgets how to be Lovely and Feminine from within!
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#605523 - 11/27/07 09:21 AM
Re: Fibromyalgia
[Re: Khilee]
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bogey2000
Newbie
Registered: 06/20/07
Posts: 36
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Hello to all, this is my formula
1.energy and focus/wake-up-concerta 120mg (add meds)
2.pain-hydro and oxy 40mg
3.depresssion-prozac 40mg
4.muscles-Soma/carisoprodol/carisoprodol
5.anxiety-zanax or clonipan
6.inflamation-800mg ibf
And still every day is a struggle. Im scheduled for a injection in my spine on Dec 3rd hope that helps. I will keep you posted.
Best wishes to all!!
Les
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#608373 - 12/03/07 08:25 AM
Re: Fibromyalgia
[Re: ROSE22]
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mrs0323
Stranger
Registered: 12/15/06
Posts: 16
Loc: I'm here aren't I?
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Ok, it looks like I've found my home here. Husband and male best friend both have RA but they seem to manage much better than me. Of course they don't have the Fibro/Chronic Fatigue/Possible MS on top of their RA like I do. I'm also very close with 1 lupus/fibro sufferer and another ra/fibro sufferer.
Currently taking:
Soma/carisoprodol-what else? 350 mg.-6 per day
Cymbalta-60 mgs. per day
Norco-10/325 and yes I'm one of the lucky ones who gets 120 a month
Methotrexate-40 mgs. once a week (this has recently been upped from 20 due to increase in pain)
Vivelle Dot-.1 patch, twice a week (due to surgically induced menopause in May)
I read all of your stories and I suppose in some ways I am lucky in that my new doctor (18 mos) swore I only had Fibro despite all my RA panels with readings off the chart. But the pain is still there despite the meds. Sleeping? Sometimes I do. I've tried all the rx sleeping meds, they did nothing for me so I tried melatonin which seems to work better. That memory foam mattress sounds very intriguing. Now, who to not pay this month so I can afford one, lol.
Doctor recently started me on 4 mg. of zanaflex-not worth it for me. I'll stick with my Soma/carisoprodol.
Main problem for me is now, after enduring 10 years of this mess I am developing a tolerance. I rarely abuse any of my drugs but there are days when the pain is just searing, like today when it's kinda chilly outside, and moving out of this chair is like getting an elephant off its behind.
Anyhoo, I am so sorry to read some of you suffering so badly and having doctors that won't take you or this wretched gaggle of diseases seriously and treat you accordingly. But know I am thinking of all of you and hoping for some permanent relief for all of us. Sometimes I think living on all these meds will kill us faster than the diseases themselves.
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