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TOPIC TITLE: Fibromyalgia
Created On 1/2/05 11:48 AM
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Been there/Done That
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1/2/05 11:48 AM
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I am sure that there are a significant amount of people dealing with this chronicly painful disease. I'd be intererested in how you deal with it and how to deal with others who think 'it is all in your mind'.

I personally take Prozac (which helps since pain and depression feed off of seratonin and therefore, the pain eats it up and you become depressed....). I use melatonin at night many times to help me get proper sleep (melatonin turns into seratonin in the body). I also take glucosamine and chondroiten for joint pain, vitamin D to help with light sensitivity, and black cohosh for those womanly issues. I do take Oxycontin for pain when needed - nothing else works.... My doctor is fine with it and I only renew my perscription every 4-6 months.

As far as others, I have an independent personality. If someone doesn't believe my "pain", I honestly don't care that much. My friends are all supportive and wonderful. My husband is also helpful and supportive, although he doesn't really understand, but he tries, B"H.

Wishing you all good health.
 
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estherrv
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2/15/05 4:41 PM
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Hi! I too have fibromyalgia. I am really uptight about the upcoming Pesach holiday since last year I was practically bedridden for several weeks after the holiday. I , too, take prozac. I find that walking briskly helps me a great deal. (My family m.d. says that exercise is the only PROVEN help for fms, and I tend to believe him after more than a yr. with this frustrating malady.) My husband is himself disabled and I am sole financial provider for the family. This isn't easy!!I live in Israel and am a H.S. teacher. I am VERY interested in swapping advice with other frum fms sufferers. I belong to several fms forums but unfortunately most are with non-Jews. This is beneficial as far as swapping info. about meds and diet, but something like Pesach no Non-Jew can understand!!Wishing everyone good health!
 
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chanieF
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2/28/05 1:18 AM
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many subscribe to FM monthly info and find the info very helpful. note that MPS and FM are two different conditions that overlap. (there's a pretty good book by starlyn ?? and mary ellen copeland on the topics.)
a hot bath (or 2) daily (NOT the same as showers!) is very important. any pool activities are great as well.
general stretching's important as well. but no repetitive excercize. whereas excercizing can make arthritis worse, it can improve FM.
oh, and lack of sleep, as well as certain foods (such as caffeine) can make it MUCH worse.
see if you can find someone in your area who does myofascial therapy and other modalities that may benefit you. (check out the upledger site to see who near you may have been trained by them in these techniques.)
 
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ernie55B
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3/21/05 8:31 PM
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HI!
I have been suffering from depression and Fibromyalgia for many years. They frequently go together. My psychiatrist prescribed NEURONTIN for the pain and this is B'H the best thing that ever came my way.


Edited: 4/12/05 at 1:34 PM by ernie55B
 
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BP Parent
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4/10/05 11:54 PM
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Don't know if anyone is still checking out this link... I have also been diagnosed with Fibrmyalgia and find it difficult to function... Had aquatic therapy for a while and it helped some- mostly with the depression but the insurance co. only pays for so much therapy and thhen I wa on my own. between the pain and the dpression i don't go to the pool once a month - let alone the twice a week that actually might help.

because of the comorbid hyper sensitivity to meds that I have I have been unable to take anything that helps... I need to find a better Doc. one that is more proactive and where i dont have to sit for an hour + waiting for my appt....

a support group may be helpful, who knows...
 
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ernie55B
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4/12/05 1:41 PM
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BP Parent- I have just sent you a private message. Please look at- it may be of help to you.
 
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ernie55B
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5/19/05 4:14 PM
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I have been suffering with FM for a number of years. For me NEURONTIN is the best thing that was ever invented. It is an anti-convulsant which is also used to prevent pain. It also B"H has prevented my migraine headaches for a few years now.
 
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MadregaMom
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1/4/06 11:15 AM
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I don't know where you live, but in my community, there are people who have indoor pools that they let people use for free. I go on M, W and it is amazing the way it helps the pain. I can definitely tell when I don't go. In the mornings, I am tired and in pain and the last thing I want to do is get out of bed and go out in the cold, but it is so helpful for pain management, I force myself. Maybe go on Luach.com if there is one in your area and post for an indoor pool or ask the people you know who swim if they have such a thing. I got my connection through a rebbetzin here in town who happenned to know this woman with a pool and spoke to her for me bc I can't afford to pay any co-pay twice a week.

Best of luck!
MM


-------------------------
Emunah isn't knowing Hashem Can help us, it is knowing that HE IS HELPING US.
 
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shosh
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1/9/06 7:25 PM
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Hi! I have had fibromyalgia for 20 yrs. And I have tried just about everything everyone has talked about. I went for the past 2 years without any symptoms and then when I moved and changed my work out routine I had a major flare. I went to a chiro/massage Dr. who did deep muscle massage and it nearly killed me (ha Ha) not really but it was the wrong thing to do and he even apologized. I then learned that there is a difference between trigger pts. and tender pts. And that when your muscles are massaged lots of toxins are released (especially if you have not had one for a long time). And that it is very important to drink lots of water afterwards. Everyone has trigger pts. but people with fibromyalgia have tender pts and they are tender possibly because of calcium deposits etc. I read a really good article written by a couple of Russian Drs. Supposedly a whole village came down with fibromyalgia and it was due to a high level of toxins found in a lake close to the village.

I hope you all continue to feel well.

Shosh
 
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emptysmile
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5/5/06 7:00 PM
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My mom has fibromyalgia and it is really difficult for me. I feel very bad for her b/c a lot of the docs dont believe her and even if her family and friends understand her how will they keep away the pain?
She does yoga and that helps her a lot but lately she hasnt had time because of pesach and other crap. So she has been doing not so well.
Its hard on me because even if i try to help out in the house i can never do her role as mom. I feel sometimes very useless and am easily deppressed. Whenever I see that my mom is staying in bed i almost have an anger torwards to her. I guess im just mean.
Shabbat Shalom.


-------------------------
"life is like a box of chocolates always too many nuts and never enough caramels."
 
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gad
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5/7/06 12:06 AM
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You are having mixed feelings (feeling bad for her, and also anger).

These are feelings that anyone would have.

It helps to remember that G-d runs the world, and everything He does is for our benefit, even if we don't understand why right now. And to be optimistic that things will be good in the future.

By helping out in the house, you are very useful, and doing a very important Mitzvah. You can only do so much, but every little bit helps and makes a big difference.

Hope your mother has a speedy recovery. Have a good week.
 
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11 Adar
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5/16/06 2:11 PM
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bs"d dear Empty Smile, Mazel Tov for so many Mitzvahs. The harder they are the more H-Shem notices. Please give yourself credit for what you do. ANyone would have mixed feelings in your situation. Do listen to Gad.. "Feelings are not Facts" The fact is that you are helping and fulfilling Mitvahs and looking for help. You might try recovery-inc.org for these sayings that help us with the day to day stuff. Can you understand your Mother's frustration and emotional pain at not being able to fulfill her sacred role ? I know that pain. She is blessed to have you. Do try to keep up your good deeds and "Endorse yourself for the effort". you are very special. I'd like to know you better, IY"H. May you and your family know only Revealed Good IY"H. Love, N
 
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OYSTER
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5/16/06 5:46 PM
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hi dear i have but a few minutes i do understand you and have been at such situations while raising my child.

remember relapses pass they are like the tides of the water they go up and down some days you feel good others you don't

Dr. Daniel Claw chief of rheumatology recommends for energy wellbutrin but prozac is also good it speeds up the brain. pacing yourself is the best. do not do push and crash.

i am sorry if i sound so abrupt in my style of writing especially the grammar i am doing this in middle of work.

how about getting from the city, state a home attendant just like we get from medicaid and noone needs to know.

don't exert extra energy to convince anyone that your disease is real science also knows it if family members deny it they do so because they are at mercy and seek to protect you by being in a state of denia..

brisk walking helps me as well it increases circulation.

try to work out of home i am sure your are talented
during relapses rest and do what is humanly possible for you at the time. for coping with this there is chizzuk from a self help book by dr. rabbi abraham j twerski md chizzuk is not specifically published for this disease however there are various stories with positive morals insights and lessons.

whenever you feel down or wish to share any information it would be my greatest pleasure
aish.com is excellent for chizuk.

good websites for treatment is prohealth.com they are good for research but understand that it is a business as well so don't buy every item they sell. their library is amazing

fibromyalgia aware is good, cfids association of america is good

the best for medical advice is www.fmnetnews.com
the fibromyalgia network.

best message board is co-cure.org

chizzuk www.aish.com

a good suggestion have a sleeping test done so they could evaluate if you have any sleeping disorder. sleep is the major hallmark becasue partt of the fatigue results from unrefreshed sleep in a study they might identify the cause and hopefully treat it accordingly.

it sounds like you are coping very well keep it up. By the way all specialist and rheumatologists state that graded excercise should be used. carefull excercise not aggressive so you should feel charleyhorsed.

yours in health

 
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OYSTER
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5/16/06 5:47 PM
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a good doctor may help you in which state and city do you live?

 
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OYSTER
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5/16/06 5:52 PM
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i'll help you with the caramels where do u live your mother needs a good doctor and she may feel better. your mother is sufferring terribly it is an invisible disease. please email at any time you want advice or if you feel angry at her it is understandable.

i know legitimate doctors.
oyster
 
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FORUMS > Pain Management > Fibromyalgia < Refresh >

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