Anyone suffer with JUST Fibro

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Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 1:08 PM (GMT -7)   
I see so many folks on here have different health issues along with their Fibro.  I was wondering if there is anyone on this forum whose only health problem is Fibro and how you are being treated.  I have Crohns Disease, Fibro, and Osteoarthritis myself, so was curious about anyone with just Fibro.  I only take 1/2 tab of Percoset 2x's a day for any of my pain and that is sufficient.  And I have alot of pain.
 
I have a 30 year old daughter whose only health complaint is Fibro.  She was in two car wrecks in her life that caused some soft tissue injuries, which I think caused the Fibro.
 
I know we are all different, but I have some concerns with how my daughter is/was being treated.  She WAS on a ridiculousy high dosage of Methadone with Vicodin 10 for breakthru pain, and I personally think that was overkill for just her Fibro.
 
She is having some legal issues now because of the stupid doctor just feeding her these heavy medications and need to know if anyone of you has no other health complaint but Fibro and how you are treated.
 
Thanks for your time and thoughts.
 
God Bless
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


genniefstr
Regular Member


Date Joined Aug 2008
Total Posts : 97
   Posted 9/10/2008 1:26 PM (GMT -7)   

Gail, I have fibro. deppression, anxity and cronic fatiue. The dr. perscribes prozac for the depression and we treat the fibro with nuerotin, methadone,and percocet for break through pain. I started the malic acid and magnisium with my nuerotin and haven't needed a narcotic since. It's only been 4 days on the malic acid and mag. so I'm hoping for the best. Hope this helps, let me know if you have any other questions.

gennie


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 1:38 PM (GMT -7)   
Gennie,

Thanks for your quick response. Do you have pain every single day? I have pain almost everyday but most of it is from my other health issues. My fibro pain acts up a few days a week. I can tell the difference between my arthritis pain and the fibro. The fibro is a burning pain and the arthritis is an achy pain.

I have been trying to get my daughter to try Lyrica or Nuerontin or even the malic acid/magnesium, but she has a problem and only wants narcotics and now is in trouble because of it. I know she is depressed and was taking Zoloft, but for some reason unknown to me stopped taking it. I am just so worried about her. If you don't mind me asking, how strong of a dose of methadone were you taking? Thanks for your help.

Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Greensleeves
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 1:57 PM (GMT -7)   

My only health issue is Fibromyalgia and up until recently, we were treating it with Cymbalta.

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 2:02 PM (GMT -7)   
Did the Cymbalta help or did it just work for a short time and then the pain returned? How are you treating your Fibro now? Thanks for your help.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Greensleeves
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 2:42 PM (GMT -7)   
The Cymbalta was always helpful with the pain management and I sincerely believe it helped with my sleep patterns.
 
Right now, being without a job or health insurance, I am just toughing it out with OTC pain medication, gentle exercise and herb teas to try to get some good sleep.
 
 

kellieak
Regular Member


Date Joined May 2008
Total Posts : 68
   Posted 9/10/2008 4:22 PM (GMT -7)   
I just have fibro (and all the overlap syndromes/problems that go along with it). I take tramadol for pain, I take sinemet for RLS. I use Salan Pas pain pads (otc) and have started the malic acid and magnesium regimine a few months ago. I have been on lots of different meds since the dx, but the tramadol and sinemet have worked so I have continued to take them.

I do have pain every single day. even on my good days there is some pain and some soreness and exhaustion. on my flare days things are unbearable. the good days are not painfree but I can maintain and live my life on good days. on flare days I don't function very well at all.

good luck to both of you!

kellie

genniefstr
Regular Member


Date Joined Aug 2008
Total Posts : 97
   Posted 9/10/2008 4:50 PM (GMT -7)   
Gail,
 
Yes I have pain every single day, and it sometimes is achy pain like when you have the flu. I'm sorry your daughter is going down the wrong way with her meds., it's so dangerous. I took 15mg. of methadone three times a day. Neurotin, malic acid and mag. is the way to go for me maybe it would work for her also. the Dr. might pull her off all narcotics. I sure this is so hard for you don't over stress IF you can help it. I hope this helps and let me know if you have any other questions or just want to vent.
gennie

Scootermae
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 9/10/2008 5:14 PM (GMT -7)   

Hi Nanners,

I'm so sorry to hear about your daughter. I just have fibro and I was diagnosed a year ago.  I take  150 mg of Lyrica at night to help with sleep and the burning sensation in my neck.  For pain I take 2 oxycontin at 10mg, and 1/2 tablet of percocet twice a day.  I just recently started taking Tramadol twice a day at 50 mg because the achyness was getting too much to handle.  Since taking the Tramadol, I no longer need to take the percocet. 

 

hugs

Scootermae

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 5:31 PM (GMT -7)   

Thank you all so much for your thoughts.  My daughter has literally become a drug addict and now is having to go thru detox because of the problem.  She did something really stupid and now is in some trouble.

She used to take Ultram.  She took so much of that stuff she was like a meth addict.  She lost huge amounts of weight, never ate and she was just continually popping pills.  I know my daughter has pain, I don't deny that, but she also has a serious drug problem now becuz she finally found a doctor to give her whatever she wanted.  She was on 80 mg of Methadone with Vicodin 10's for breaththrough.  This just sounds like overkill to me.  If she got a headache she was mad becuz the med didn't take the headache pain away.  I am hearing stories about some of the things she has done, and I am shocked.  This was the PTA mom, class aide etc.

I am hoping after this very tough lesson she will find something other than these heavy narcotics to try.  I will keep on her about the malic acid/magnesium.  This sounds very promising.  I would try it for my fibro, but because of my delicate stomach due to Crohns disease I don't think it would be a option for me.

Thank you all again for your opinions.  They really mean alot to me.

God Bless,

Gail *Nanners*

 


Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


kmhayes
Regular Member


Date Joined Nov 2007
Total Posts : 346
   Posted 9/10/2008 5:49 PM (GMT -7)   
Hi Gail,
 
My only diagnosis is Fibro...well I guess thats not true, also reynauds phenom, but that is very minor.
 
I am not taking any perscriptions. I take tylenol or aleve for pain, which honestly does not make it go away, but makes it more bareable. I would say that it does sound like what your daughter was perscribed was overkill, but everyones pain levels are different...
 
from what you have mentioned it seems like your daughter is has got an addiction. please do not take any offense to anything I say, but addiction to these drugs ( and any drug...or substance for that matter) needs to be treated like a brain disease. by taking high doses of drugs, ones brain becomes rewired. addiction should be treated like any other curable disease. people who take drugs do not set out trying to become addicts....and it seems as if your daughter ( with the care wrecks you mentioned) was probably just trying to find something to stop the pain, and on the way fell into the cycle that many people can, and do.
 
I am no expert, but I think she should seek medical help to get off of the drugs she is on, and find something else to manage her pain.
          Kelly


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 6:01 PM (GMT -7)   
Thank you Kelly, don't worry I am not offended at all. This is my child and it kills me that she has gotten into this mess. I, her Dad, her husband, mother in law, all think she should go thru rehab, but she doesn't want to do that. Her poor husband is going to search the entire house for any hidden drugs while she is asleep tonite, as she is supposed to have been off the Methadone completely for 2 days already, and should be going thru some serious withdrawals but she isn't doing that bad. So we are concerned she has some hidden stash. If any of you pray, please pray my daughter gets the help she needs.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 9/10/2008 7:43 PM (GMT -7)   
Well I currently have all the conditions that are listed in my signature. The only prescriptions I'm currently taking are Necon for the PCOS and Albuterol as needed for the asthma. I'm in pain everyday from the fibro, but I usually don't take anything for it unless the pain is severe. Sometimes I'll take a couple of ibuprofen, but usually I take ginger root extract for the pain. I recently started trying malic acid/magnesium supplements but haven't been on them long enough to see an improvement. Hopefully I'll be able to wean myself up to a higher dose if the side effects go away.

In addition to the conditions listed in my signature, I also used to have hypothyroidism and acid reflux. Turned out the hypothyroidism was caused by an iodine deficiency so I cured it with iodine supplements and now I just make sure I use multivitamins with iodine in them. Still have some issues with acid reflux but not nearly as bad as it used to be and I just take Tums when I get heartburn.
~Kythe
____________



Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40581
   Posted 9/10/2008 7:59 PM (GMT -7)   
Hi Nanners,

I am praying for you and your daughter.

Luv and hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


still_kickin_30
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/10/2008 8:30 PM (GMT -7)   
I wasn't sure if you were aware or not, but there is something you might want to look into. If you are out of work and can provide medical documentation that your ability to work is being limited or completely eliminated all together. The federal government has now declared fibromyalgia as a condition that is covered under the disability guidline rules. Many people with long term diagnosed fibromyalgia have been awarded disabilty support payments monthly as well as being covered under the medicare health insurance program. I am sure you could contact the local disabilty office in your town to find out the acceptance criteria in your area. It may be something to provide assistance so you can at least be able to ensure you are able to continue with your medical care. This is not a disease you wanna mess with as it could end up causing more damage in the long run some examples are nerve damage due to pressure from muscle tension penching the nerves, muscular displacia, muscular oxidative damage from the muscles being in a constant state of flex depriving the muscle of oxygen ect. I hate to see when fibro patients try to self treat and end up causing more damage due to not having coverage due to financial situations caused by not being able to work. I work in the health care field and also have fibro and I see people in your situation frequently.

Still_Kickin_30

Fibromyalgia, ADHD, PTSD, Carpal tunnel, Arthritis
Methocarbamol 750MG, Adderall 10MG, Motrin 800MG, Tramadol alternating with Hydrocodone

Post Edited (still_kickin_30) : 9/10/2008 9:39:08 PM (GMT-6)


Greensleeves
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 9:06 PM (GMT -7)   

Thanks for the info. I didn't realize that Fibro was recognized as an actual disability now. I was diagnosed so long ago that disability wasn't even an option then!

I am able to work, it's just that it's been hard to find anything, the economy being the way it is. I live in a very small town that is rather isolated (Central Idaho) so finding an opening is tough.

The good news is, I got two phone calls yesterday and one today, asking me to come interview. I'm beyond thrilled and being cautiously optimistic that something will happen for me soon. They are not jobs for which I am trained, but I'm glad to announce that I AM teachable! smilewinkgrin


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 9/10/2008 11:28 PM (GMT -7)   
I am not so sure about your daughter.

Many people with fibromyalgia only need narcotic pain relievers. to others we might seem addicted but, without meds, we are at a severe dysfunction.

I am not there to see if she is really addicted. I just wanted to note that your daughter is not the first person with fibromyalgia who was accused of being an addict by a relative. In many cases this diagnosis is wrong.

It is unfair to assume addiction. Please speak to a counselor so that you can get help for yourself. If she is addicted, you need help also.

Donnaeil

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2008 6:59 AM (GMT -7)   
Donnaeil,

I too have Fibro so I am definetly not one of THOSE types of family members. I definetly believe my daughter has pain, but she has gotten so out of control with her medications that she is now literally in trouble with the law. Another clue, she was constantly trying to get her prescriptions filled early. Another clue, trying to get meds from other people when she was low, even doing the same after the law and doctor have cut her off.

I also have lived with Crohns Disease myself for almost 33 years and know how anyone with a chronic condition feels when people judge you because on the outside you don't look sick, but are literally dying inside. In her case, this HAS become an addiction. And believe me I know the difference between dependency and addiction.

Regards,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


M&M lover
Regular Member


Date Joined Sep 2008
Total Posts : 21
   Posted 9/11/2008 1:51 PM (GMT -7)   
Nanners~
 
I am one who only has fibro.  I'm 40 and have had it for 6 years.  No depression and no meds, I just deal with it and try to stay as happy and bubbly as I ususally am.
 
Like your daughter, I was in 2 auto accident where my vehicle was totalled both times.  Both accidents were not my fault but WOW did I get hurt.  Even though they were years ago, when I was 16 and 24 I think that may be how I got fibro.
 
Everyone deals with this differently.  Prayers to your daughter!!!  I think that is why I'm trying to work through this without any meds - I just don't want to depend on anything.
 
She is very lucky to have you and your DH!!

CINDY30
Regular Member


Date Joined Jul 2008
Total Posts : 48
   Posted 9/11/2008 5:17 PM (GMT -7)   
Nanners, I just have fibro and my doc changed me to Cymbalta today. Hopefully that works because I am miserable. about your daughter's situation, I can sympathize. I was on so many pain killers at one time that I just gave up. My kids were virtually raising themselves. I can't believe how quick Docs are to prescribe pain meds. My fibro was also caused by a car accident so it seems I have a lot in common with your daughter. I hope things get better for her, I know how it feels to give up and let the drugs take over.

anonymouse
Regular Member


Date Joined Jul 2008
Total Posts : 40
   Posted 9/11/2008 10:14 PM (GMT -7)   
Nanners. I will keep your daughter in my thoughts and prayers. Good luck to your family.
I am not against narcotic pain management. But some will abuse it. Unfortunately, this is what makes it hard for people who do not abuse it to get it. Dr.'s are reluctant to prescribe it out of fear. A diabetic needs insulin but that does not make them an addict. People on heart meds need their pills and they aren't addicted. They are dependent on them to lead a normal, healthy life. Addiction and dependence are two different things. If narcotic pain relief is the only route of relief for some that doesn't mean they will ever get addicted....they will depend on these drugs to live a normal life. What works for some doesn't work for others. Someone in severe chronic pain often has no choice and if it relieves their pain and doesn't make them feel funny (high to a certain degree) then it was explained to me that the meds are targeting the true pain and the person needs them. I had a hard time for awhile figuring out the difference between a person becoming addicted versus dependent and when the Dr.'s took the time to explain it to me I finally understood. Again, best of luck to your daughter. :)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2008 6:19 AM (GMT -7)   
Anonymouse you said it so well, people like my daughter who started abusing them make it hard for other good people who need narcotics to obtain them. I am one of those people because of my Crohns Disease, Fibro and Osteoarthritis. But I have never abused them and am not addicted and luckily not even dependent on them.

But there is good news. She is almost completely clear of those toxic medications and has agreed to try the malic acid/magnesium. I even ordered it for her yesterday and am having it shipped directly to her. So I am hopeful that my daughter is turning the corner and starting to treat her fibro in a more responsible manner (for her). When I say more responsible, I mean no longer abusing them. Thank God!!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/12/2008 7:05 AM (GMT -7)   
Nanners I hope your daughter can beat this. I have a family member that became addicted to pain meds after a fall. Like your daughter she got into trouble with the law over her addiction. It is a terrible thing that can ruin many lives. As far as I know this woman has been clean for many years.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/13/2008 10:53 AM (GMT -7)   
Just thought I would update you all. My daughter is BACK! She is completely clean of all opiod pain medications and actually doing pretty good Fibro wise. She actually hurt more on the opiods than she does now with out any narcotics. I have ordered her the Malic Acid/Magnesium and she is excited to try them for her Fibro. She is having some problems at night sleeping, but she is going to try some other herbs to help with that. She didn't realize how bad she had become on the narcotics and is feeling quite embarrassed now. I am so glad to have my sweet girl back.

Thank you for all your support during this difficult time.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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