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Replying to Topic: fibromyalgia, anyone?
Created On 2/6/07 10:46 AM by qwerty


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qwerty
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2/6/07 10:46 AM
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Am I the only one out there....? Please share what has worked for you, I'm going crazy from the pain etc. and I want to learn what treatment options have worked for others.
 
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BH613
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2/6/07 2:42 PM
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I have fibro and arthritis and some other issues and I used to think "AHHHHH". I utilized the Mayo Clinic's Chronic Pain Clinic's 3 week program and B"H am so much better after the fact. I would be happy to share info. You could lookon the pain page to see info.
Refuah Shelaimah,
Miriam
 
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qwerty
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2/7/07 11:10 AM
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Thanks for the info, however it is not feasible for me to go to Mayo Clinic at this time. Cost is one hindrance and placing my young children is another one, as is my special needs child. I'm looking for ideas that people have tried, not something I'd need to travel to another state for.
 
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BH613
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2/7/07 1:21 PM
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Learning about relaxation, diaphramatic (sp) breathing, ot, pt and overall basic pain managment and info on hronic illnesses are the key!
 
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BH613
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2/7/07 1:22 PM
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Also,
as tough as it is, you must exercise consistently, at least 5 days a week. After about 2 weeks, you will notice a positive difference.
 
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mindypepper
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12/10/07 8:45 AM
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i have fibro and herniated disks in the neck. I have found that heat and massages help.
 
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Youlookfine
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3/11/08 9:33 PM
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I have suffered from FM for 12 years.
While there is no cure, I can tell what makes it worse and things that should be avoided.
I can also tell you about other symptoms that you probably have, but did not realize were related to your FM.
There is a lot of bad information out there about FM, and a lot of people trying to sell something claiming they can help you.
While the physical pain is very real, there is a mental aspect to FM as well. You look fine - so no one understands the pain that you are suffering (including many medical professionals).
Please advise if you (or any reader of this message) are still interested in hearing more.
 
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Youlookfine
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3/13/08 9:52 PM
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If you have FM, most likely, you are suffering in silence.
You are asking to be heard, but no one is listening
You cannot understand why no one (including your doctor) understands what you are going through.
You are asking yourself “what is wrong with me?” and “will I ever be normal again or have a life?”

If you have FM, you probably have a sleep disorder, are highly sensitive to scents, may be suffering from depression, and are taking medications that are not helping you.

There are doctors who understand and can help, and there are programmes where the professionals understand and can help. They are just hard to find.

I am a 51 year old male suffering from FM, a syndrome where most patients are female.
I have had FM for eleven years and have learned much during these years. I would like to share my knowledge with you, so you will see you are not alone.

Acceptance:

By yourself

Accept the fact that you will not keep up with a healthy person.
You cannot stand as long, because you tire faster.
You cannot sit as long, because you get stiff faster.
You cannot run as fast (if at all), because you do not have the energy.
If you go to a wedding, you may not be able to dance, or stay late.
I cannot bowl, I cannot skate, and I cannot go swimming in a regular pool. These are things I have accepted.

Once you accept these realities, you will not try to live beyond your capabilities, and you will have much more satisfaction, living within your zone. You do what you have to do

By others

You look fine. No one understands the pain that you are living with. If you were wearing a cast, and walking with crutches, they would. But you look fine.
No one can comprehend the constant pain that wears you out.
Accept this fact, and do not even try to educate them.
If your closest family members understand, you are in great shape. If they do not, have your health professional speak to them.

The professionals at Toronto Rehab, opened my mind to acceptance.

More to follow.

 
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yaldatova613
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3/27/08 9:31 AM
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i'd love to hear more. please go on.
 
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Youlookfine
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3/27/08 9:01 PM
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This has been my experience with medications, supplements and diet.


Painkillers

You pain is real. Your pain is constant.
The only painkiller that really offers relief is an opiate, such as oxycocet, oxycontin or percocet (these are three different names of basically the same drug).
You doctor will be very reluctant to prescribe this, as he or she does not understand your pain level and will be concerned that you will become addicted. Do not accept this line about addiction. Get a doctor that understands.

It is better to take one of these opiates and function, than not take it and be in pain and not function.
I guarantee, that if the pain goes away, you will be very happy to throw away the opiate.

You are only taking this to help you cope. You are not a drug addict taking this for a high. If one of your other medications is effective in reducing the pain, to a level that you can cope, you will not need the opiate.

Prescription drugs

Neurontin/Gabapentin (same drug, one is the trade name and one is the generic name)
Lyrica (advertised on television as the only drug approved from fibromyalgia) this is a newer and improved form of Gabapentin.
These are anti – convulsants. They are used to treat epilepsy. They work by altering the chemicals in your brain and have been found to relieve pain. Over the long term, they just stop working

Topamax
This drug also alters the chemicals in the brain and has been found to relieve pain. A side effect of this drug is weight loss. Another side effect of this drug is memory loss if the dose is too high.

Tramacet
This drug did absolutely nothing for me.

Mirapex
This is a Parkinson’s drug. It is very effective relieving the pain in the tender points. In my case, it totally upset my sleep patterns, ( I mean big time - 1:00 AM, 2:00 AM even 3:00 AM and I could still not fall asleep). I started on a low dose and built it up to full strength. Just as I got used to it and my sleep improved, the dose increased and I started not sleeping all over again. At full dose, my body could not get used to it and I just did not sleep. After a few months just stopped working as a pain killer.

Xyrem
This is a very powerful sleeping drug which has only been available in Canada since August 2007. It has been available in the US a little longer. This medication puts you into deep sleep. Because it is so powerful, it is highly regulated. Only approved doctors can prescribe it and only approved pharmacies can dispense it. You must start at a low dose and build up the does very gradually. The theory is that FM is a result of sleep deprivation. Cure the sleep deprivation and you will cure the FM. This is a very expensive drug and not all drug plans cover it. It costs approximately $2200 per month. I have been on Xyrem since Sept 2007, building up the dose to full strength. (every one has a different full strength level depending on you body) I hit full strength in January 2008. My pain level is still very high, but according to my doctor it is starting to work, as I have less pain in the tender points. My doctor reports one patient who has been completely cured of FM after taking Xyrem for six months. With Xyrem, the sleep is great. In the morning I have aches and pains, but I am not tired. Xyrem comes in as a concentrated liquid solution. You dilute it and take in two doses. One at 11:00 PM and one at 3:00 AM. It works within half an hour and completely leaves your system in three hours. There is never a hangover.

There is another painkiller prescribed for FM , that is an inhaled form of cannabis. I have not never used this and cannot comment on it.

Painkillers that are anti-inflammatories do nothing for FM. You do not have arthritis. You have FM. Much of the pain is similar, but the source of the pain is very different.


Vitamin supplements

I take the following supplements
MSM for joints
Salmon oil
Ester C
Be wary of people or ads who claim they have a vitamin that can cure FM, or claims that FM is caused by a food allergy. Chiropractors can help relieve pain, but they cannot cure FM.
There is a fibromyalgia cookbook. FM cannot be controlled or cured by diet. Many people are just trying to capitalize on your desperation to be relieved of pain by selling you something useless.


Weight and diet

If you are overweight, consider this. Lift a 20 pound bag of potatoes. Walk around carrying this bag for a few minutes. If you are like me, you just exerted a lot of energy, which you could not spare. Look at yourself. If you lost 20, 30 or 50 pounds, how much easier would it be for you to carry yourself during the day?

Solution – Just eat healthy. Have normal sized portions. Ensure your diet includes dark coloured vegetables. Cut down on carbs, but do not cut out carbs or you will be hungry and snack. Cut out all junk foods, cut out snacks and stay away from sugary foods. If you do not know how to eat healthy, see a registered dietitian. If your doctor refers you, it will probably be covered by insurance. Otherwise, it is not expensive to have an hour consultation and if you listen to what you are told, it can be very helpful.

More to follow





Edited: 3/27/08 at 9:09 PM by Youlookfine
 
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chanieF
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3/30/08 8:13 PM
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i really like alot of what you wrote. th emeds..the diet etc
just wanted to add a co things.
about fish oils-3000-4000 mg daily should be good. cutting out artificial colors and dyes and preservatives is important. read ingredients well!!!!
also, probiotics can be very helpful. an excellent brand is Natren, the non-dairy healthy trinity. probably 3 of these a day for s/o with FM..at least until things stabalize (and then two a day.)
an osteopath who specializes in craniosacral work can do wonders. topical arnica, the gel one (stronger), can also be very good for inflammation. there's an oral one as well, and it is unbelievable for swelling and inflammation, but i wouldn't stay on it long term.
a hot bath or two daily can work wonders. and access to a pool is excellent as well. because there's no weight in the pool, moving around and light exercises are far easier in the pool, and for FM exercise is critical.
that's it off the top of my head...
 
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Youlookfine
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3/31/08 9:13 PM
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Exercise

This is very important, but stay within your zone. Do not hire a personal trainer who does not understand FM (even though they will say they do) to put you on a regiment. Only do what you are comfortable with and what does not cause pain.

Stretching exercises are very important to alleviate pain caused by stiffness. A physiotherapist can teach you very effective stretching exercises.
Here is one stretching exercise that helps me.
Most of my pain is in my legs. I stand at the bottom of a staircase facing the stairs. I lift one leg and rest it on the fourth step. (You may have to build up to the fourth step, so start slowly at your own level) This stretches my leg. I try to hold this for 30 seconds, and then alternate with the other leg. I also try to bend forward from the waist, while the leg is resting on the step. I find this very painful while doing it, (All moves are done very slowly) but afterwards, I generally have genuine relief from the pain for a few hours. If I am really daring, while the leg is resting on the step (not while I am bending forward) I will turn the foot that is on the floor outward, and twist the leg that is resting on the step down, so it is resting on the inside of the foot instead of the heel. This stretches the inside of the upper leg.

For years, I was advised to do water exercises. It is good for FM. This is true, but the advisers left out one very important fact. FM suffers are very sensitive to water temperature. A swimming pool that is comfortable to a healthy person will be freezing cold to an FM patient. Staying in a cold pool will increase your pain. Exercise in a heated pool is very effective. The buoyancy of the water allows you to do things you otherwise could not do. Toronto Rehab has a pool heated to 95 degrees Fahrenheit, and an in pool gentle exercise programme (usually only attended by women). You will need a doctor’s referral to join the programme.

I recently joined a Tai Chi class. Although Tai Chi is really a martial art, it employs many slow moves, which stretch many muscles. It is very effective in health recovery and the instructors are aware that many people in the class suffer from various ailments, and they are sensitive to your limitations.

Swimming

A stated above, FM patients often exhibit sensitivity to cold. A healthy person may find the water in a pool to be comfortable, but an FM patient will find the water freezing cold. Do not go in the water if it feels cold to you. Live in your reality, not a healthy person’s world.

Chlorine – FM patients will find that chlorine can trigger a pain reaction. If you do swim in a chlorinated pool, wash the chlorine off thoroughly as soon as possible.

Hot Baths

Hot baths are very important. Most people do not have time for baths. When you have FM, this is part of your refuah. Make the time, a few times a week to just soak in the hot water. If you are fortunate enough to have access to a whirlpool, this is even better. As I will explain later, it is extremely important to use an unscented soap.




more to follow


Edited: 4/10/08 at 11:36 PM by Youlookfine
 
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Youlookfine
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3/31/08 9:45 PM
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Thank you for your comments. I will try to expand on them.
Remember FM is not arthritis. Arthritis suffers have inflammations. FM sufferers do not. Taking medications or ointments to reduce inflammation will not help FM pain.
 
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BH613
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4/1/08 10:39 AM
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Youlookfine has given lots of information. My only questions/concern about his comments are in realtion to the pain medications. Addiction is REAL!!! There is no such thing as this level of pain medication works for me and I will be fine. Your body gets used to it and it will need more and MORE and MMMOOORRREEE!
You will become even worse off than you were before.
I was there!
B"H for the Pain rehab center at the MAyo Clinic. I got my life back almost 4 years ago and I am going strong still Bli Ayin Horah. Please, I cannot stress enough the importance of NOT starting pain meds.
Find a program to help you.
I could explain more if you have any questions.
B'Hatzlocho.
Miriam
 
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Youlookfine
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4/1/08 10:32 PM
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I disagree. At one point in time, I was taking 3 percocet a day.
One of the other medications started to work (that is to correct the problem with pain receptors <see next pargraph> )and I stopped the percocet cold.
After a while, the other medication stopped working and the pain came back , so I went back on Percocet. First 1/2 a tablet, then when the pain increased I went up to one tablet. I have never gone back to 3. If you think you can control Fibromyalgia using a "program", you do not understand the pain intensity and levels. Many doctors have told me "I do not want to give you percocet, because I do not want you to become addicted". They do not understand FM pain.
My FM specialist (doctor), says "It is better to take percocet and function, than to be in so much pain that you cannot function."

FM affects one's brain. It plays around with the pain receptors. It turn off the receptors that repel pain, and turns up the receptors that amplify pain. Percocet helps you cope. It is not a cure. The cure will come when the pain receptors go back to normal.

I do agree, that one must be vigilant, not to become addicted, and not take percocet when it is not needed or more than is needed.


Edited: 4/2/08 at 6:02 PM by Youlookfine
 
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Youlookfine
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4/9/08 11:12 PM
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Sleep disorder

It is my personal feeling that FM, is the result of cumulative sleep deprivation. As I stated above, the brain chemistry in FM patients is out of balance and this is causing the pain depressors in the brain to not work, and at the same time is causing the pain receptors to amplify pain. I will report on my progress with Xyrem as I have more to report.

Many doctors are reluctant to prescribe drugs to help you sleep because this may lead to dependency or addiction. Keep a record of how many hours you sleep and how many of these hours are good sleep. Show the results to your doctor. There are some really good prescription sleep drugs available in the US, that are not available in Canada. As I live in Canada, I cannot comment on my personal experience with the drugs. I can only repeat what my doctors have told me. An over the counter medication that helps with sleep is Melatonin. This is available in some pharmacies and in many health food stores.

Here are some other steps you can take to help improve your sleep.
If you snore, or are overweight, go to a sleep clinic to be tested for sleep apnea. This could save your life. When you have sleep apnea, you stop breathing in your sleep. Typically (but not necessarily, if you are overweight, the weight lays on your windpipe and caused is to remain closed when it is time to open to take a breath. People who are not overweight can also have sleep apnea. It is just a function of the shape and position of muscles around the windpipe that cause it to be blocked, when it should be opening. When your body is starved for oxygen, the brain sends a signal to your body to wake up and take breath. You may not realize that this is happening, as you may go from deep restorative sleep to light non-restorative sleep. Once you have come out of deep sleep it is unlikely you will return to deep sleep. I was diagnosed with sleep apnea about 16 years ago. The first time I was tested, I had stopped breathing 120 time in a six hour period.

The remedy for sleep apnea is CPAP Therapy. This requires you to wear a mask over your nose when you go to sleep. The mask is attached to a hose, which is attached to a Continuous Positive Air Pressure machine that blows air in to your lungs. Because the air flow is continuous, you windpipe remains open at all time. There have been tremendous improvements to CPAP therapy over the years. The masks are much more comfortable now than the early ones were. The CPAP machine are almost silent now. The machine are much smaller and lightweight.

If you are diagnosed with sleep apnea, and a CPAP machine is prescribed, many insurance plans cover a portion of the cost. The CPAP provider will try to sell you a humidifier for the machine. For most people this not necessary. What is essential is to keep the mask and hose clean, by washing it very often with gentle dishwashing soap.

I keep my machine running the entire Shabbos and Yom Tov. I plug the hose when I am not using it, otherwise you will cause the display to change as it warns you that there is an air leak. Some machines automatically turn off if there is no resistance. Not using a CPAP machine when you have sleep apnea is Mamish a Sacana to your life. If you stop breathing in your sleep , this places so much stress on your body, that it can chas vesholom cause a heart attack. If you do not believe me, ask your doctor, or the doctor at the sleep clinic.

Other things to do to improve your sleep are:

Do not eat before bed.
Do not exercise right before bed.
Do not use your bed for anything other than sleep.
Take a warm bath before bed.
Sleep in a cool room, with a warm quilt.
Do not let your family members wake you to take a phone call.
Try to go to bed at the same time every night.
Do not go to bed tense or stressed. Try to have a wind down time before bed.

There are some good books written on sleep hygiene. Ask your doctor to recommend one.


Reaction to scents

In many FM patients, perfume, cigarette smoke, air freshener, triggers immediate and severe pain reactions.
Make your home and workspace scent free.

Depression

After years of suffering with severe pain, and with no one understanding what you are going through, do not be surprised if you are depressed.
Do not be embarrassed to get professional help. Therapy (talking with a professional) can be as effective as anti depressant drugs. Exercise is also an effective anti depressant. In Canada Psychiartrists are covered by national health care insurance (OHIP in Ontario) while Psychologists are not. Your family doctor must refer you to see a Psychiatrist.

more to follow

 
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Youlookfine
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4/13/08 10:53 PM
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Take care of yourself

Therapeutic massage is an excellent way to relieve pain, provide the person giving the massage is aware of your FM pain and is gentle. Physiotherapy can also help, provided that the therapy is geared to an FM patient.
Take warm baths. The relief is temporary, but they really help.
Get a disability sticker for your car. It is hard enough getting through the day. Do not waste energy walking from the other end of the parking lot, when you do not have to.

Do not overexert yourself for others. No one will appreciate it and only you will suffer.


Medical care

Most doctors do not understand FM and have no idea as to how to treat it.
Anti-inflammatory drug are totally useless. You do not have arthritis, even though much of your pain is similar to arthritis pain.

Find a doctor that is compassionate and understanding. Seek an expert with experience treating FM.

My family doctor first predicted that I had FM, but he did not give me a formal diagnosis.
My psychiatrist (who I was seeing for depression) directed me the a rheumatologist tested my tender points and formally diagnosed me with FM. I felt "what a relef - finally a doctor who can help me". But the rheumatologist refused to accept me as a patient with no explanation. He just said " I will give you a letter for your disability insurance" (I do not have disability insurance), and "do not come back". I was so depressed when I heard this. My family doctor is very compassionate, but he said I cannot help you with FM, I know nothing about it. I went through the material sthat I had received at my course at Toronto Rehab (which my psychiatrist sent me to). In the materials I found references to a physiotherapist who specialized in FM. I went to see her, but she did not help me. But she did refer me to my current FM doctor.
I live in Thornhill, which borders on Toronto. My doctor is Dr David Saul. Dr Saul limits his practice to the treatment of Fibromyalgia and Chronic Fatigue Syndrome. When I go to his office, there are people in the waiting room who have come from hundreds of miles away to see him.

If you cannot find a doctor who specializes in FM in your community, consider contact ECHO (Ezras Cholim). ECHO is a medical referral service.


Financial Aid

If you have had to stop working, and have disability insurance, make sure that you doctor writes a good letter or you with have difficulty collecting the disability insurance.
You may also be eligible for the Canada Pension Plan disability insurance.

These have been my experiences with FM. There is no cure, but if you live within your parameters, you can go on living. If you can, try to keep working. That will help keep you from falling further into depression. It will keep you active.

As a personal note, (and I know this is not for everyone) after being an employee with a few different employers for 28 years, (from 1979 to 2007) and realizing that no employer will ever understand what an FM sufferer is going through and accomodate me (or you) , I quit my job and went into business for myself. I now have much more control over my hours, I am very motivated, and very very happy. I am the sole source of income for my family. So it is not like I cut back my hours and income and I am being supported by my spouse. It was a very difficult decision to arrive at, but I am extremely happy that I finally did this.


If I can help anyone, do not hesitate to ask.








 
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flowermom
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8/10/08 2:57 AM
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B"H

Hi. I used to come here a few years ago, but the fibro site (within FrumSupport) was basically dead. I just popped in today and saw you guys and was happy to see the interaction.

I was diagnosed over 7 years ago, but suffered for many years before that. I have found many things that help, thank G-d. Not everyone would approve as not all are kosher, but they eliminate extreme pain and halacha allows that. I try to mix modern meds and homeopathics.

I take glucosamine and chondroiten. I like the one from Trader Joes (and I tried MANY). I tried the Max Glucosamine, but I need the chondroiten also - it just didn't work well for me. I suffered, and it took three months back on mine to get back to myself. I also take 2000iu Vitamin D3 daily and that helps with the sound and light sensitivity. I have one website that has been great thru the years. I learned a lot from them. Don't know if I am allowed to mention them here, so I will pass for now. Anyway, I also take an antidepressant. I was on Prozac for many years, but after 5 years, it stopped working as well and we didn't want to up the dosage. They tried me on several things since, including Cymbalta, but they weren't good for me. EAch person reacts differently to meds. Cymbalta just didn't help and when they switched me to Lexapro a few months ago, I have been in heaven. This helps the pain a bit and the nervousness, etc. A LOT! I would also suggest Malic Acid ( or lots and lots of apples). I can't as I am allergic to apples and anything with apples. Many of the natural remedies emphasize malic acid and most people who take them are very happy with the results. I am on a CPAP(sleep machine) for severe sleep apnea, and I take natural stuff and control my diet to keep from being diabetic (whole grains only and no refined sugars AT ALL.)

Look, there is no known cure for Fibro. Actually, they still don't know what it is. I define it as "we know how much you hurt, we know where you hurt, and we don't know much more...."

There is a great company called "Nature's Sunshine" at www.naturessunshine.com that has many high quality natural products. Some are kosher, but not a great heksher. They have vegetable capsules available. They also have a great medical support with someone who can answer questions. I have been very impressed with their knowledge. Also, if you purchase something and don't like it, they will take it back and refund your money. I had that with the fibro products that I was allergic to.... They have a great product called "Immune Support" that has stregthened my immune system. Again, I was brought up that meds are different if they save your life.

Additionally, Hylands makes a new homeopathic product called "Leg Cramps with Quinine. Quinine is also in tonic water, but most do not like tonic water, and this is a mild pill form. Quinine is a muscle relaxant in small amounts. In large amounts it helps against malaria and is also a poison (muscle paralizer.) It works nicely if you are just stiff. I still take Percosed when needed (some days more than others) but overall, with this, I have reduced what I take. With the supplements, etc. I have reduced myself to 60 pills of Percosed every 4-6 months. Not bad.... I take 1/2 at a time of the low dose - just enough to take the edge off. The pain doesn't disappear, but becomes managable. When I look at others, I am very glad to only have what I have!

Just remember, each person is different and reacts differently to meds. Hope some of this helps someone. I will check back in soon. Love to hear your comments.

Refuah Shlema to all.

 
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chanieF
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8/13/08 2:05 PM
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can't remember if i posted this before or not..but, on the subject of supplements..i think D is a great idea b/c they do think many pain conditions (and cancers CVSH) are caused by lack of it. omega-3 fish oils are also great for aches and pains and for many other things as well so are a great supplement for nearly everyone. and many believe that FM is secondary to candida so either doing a candida diet and/or taking things to kill yeast and/or change your body's PH can be very helpful. also just being aware of chemicals and preservatives in foods/reading labels is important.
 
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group support
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11/6/08 6:00 PM
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Hi, I suffer from Fibromyalgia, Osteoarthritis, and Raynauds which are all very painful conditions. I do suffer from sleep deprivation, and stress in my life adds to the pains. I can't sleep at night for many years due to these conditions and from having herniated lumbar and cervical discs that I go through hell. But, what I found to be effective and to help me relieve the pains is I have Acupuncture treatments. I think anyone who is suffering from these conditions which are autoimmune diseases, should try it. The acupuncture needles do no hurt and they open up your own body endorphins so your body has a chance to deal with your pains. Chinese medicine is very helpful and relaxing and it helps more then the meds the doctors give because the meds cause more side effects and it only relieves the pains temporarily.
 
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If you think you or someone you know has a medical emergency, call your doctor, Hatzolah or 911 immediately. FrumSupport cannot and does not monitor forums and postings and cannot and will not pro-actively obtain help for users in need as FrumSupport does not have the funds or people power to accomplish such tasks and it will infringe on the anonymity of each user. Therefore, FrumSupport’s liability is limited by this paragraph and as further set forth in the Terms and Conditions of Use.