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Once you get it
13 Replies
Karkel - December 4

Does it ever go away ?


Fantod - December 4

No - not really. There is no cure for Fibromyalgia (FMS). The mechanism that causes it is not understood. Some people may go into remission for a while but once you have FMS you have it for life. Any other questions we can help you with? Take care.


kvc33 - December 5

I know of a few people who have recovered. Some get better for a time and make the mistake of going back to work and then they get sick again. There is always hope but if you have had it for years it is probably going to be with you for life.


Canada17 - December 6

My husband has this hope. He tells me to keep a "positive" attitude that pregnancy will "cure" me. I highly doubt it I have had this all my life and I doubt a second pregnancy at 27 is going to make any difference. I think it would be foolish of me to be naive, or positive as my husband calls it, to believe that once the pregnancy hormones are out of my system I won't suffer anymore.

The good thing is that once you have it, if you are able to learn your triggers and thus mitigate your symptoms, you have better management over this dis-ease.

No cure, but we still have hope.


axxie - December 7


In response to your question, does it go away./...

Prognosis for People With Fibromyalgia

Fibromyalgia is a chronic condition. While some people do experience long remissions, no one who's had fibromyalgia can truly say they don't have it any more.

As for the progression of the illness, it's hard to say whether your symptoms will get better or worse with time. Because fibromyalgia isn't degenerative, its course isn't clearly established like it is for many diseases.

Some experts say about a third of us will get worse, a third will improve significantly, and the remaining third will stay about the same. Some studies have linked early diagnosis and treatment to better long-term outcomes, but other than this it's unclear what role treatment plays in the progression, or lack thereof, of fibromyalgia.

Now what you need to know.....

While a lot of fibromyalgia treatments are available, you'll likely need to experiment with different options before you find what works best for you.

Fibromyalgia treatments include:
Prescription drugs
Complementary/alternative treatments, including massage and physical therapy, chiropractic, and acupuncture
Vitamins and supplements
Moderate exercise, but only if done correctly

Lifestyle changes, including diet, stress management, and pacing.

Every case of fibromyalgia is different, and no treatment works for everyone. You'll probably need to work closely with your doctor to custom tailor a treatment regimen that helps you become more functional. Many people benefit from a multidisciplinary approach, which involves several healthcare providers.


sherrodguy - December 9

I have recently been diagnosed with fibro and am in denial. Going for a second opinion.

In Fibro Fog


Fantod - December 9

sherrodguy - Welcome to the board! You are wise to get a second opinion as Fibromyalgia (FMS) only affects about 20% of men as opposed to us lucky women.

This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol do not work for the type of pain associated with FMS. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists (the preferred doctor for treating FMS)are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

I'd also like to suggest that you be tested for a vitamin D deficiency. This is done with simple bloodwork. You should also consider being tested for gluten sensitivity. It is possible to be sensitive to gluten without having full blown Celiac Disease. The most accurate results are obtained using a stool sample. Either of these issues will cause widespread pain. And, many people with FMS have problems with Vitamin D levels and/or gluten.

With regards to to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

You could also purchase "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information. Read yourself and pass it around among family and friends. I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

If you want to identify a fibro-friendly rheumotologist in your area, there are a couple of options. Go online to the National Fibromyalgia Association website and see a list of fibro-friendly health care providers in your area. Or, you can call your local hospital and ask for the physician referral service. See if they can recommend a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. Take copies of all of the tests that you have already had done to save time and money.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.


sherrodguy - December 9


Sorry! I know the name can be misleading, and of course is not my real name, but I AM female.

Thank you for the wonderful information, and in response, I have been dealing with the pain issue for quite a few years but thought it was related to an injury from that time period. They determined that I had 5 bulging discs, however I took those MRI results to a pain specialist and was told by him that the bulges were not significant enough to cause the pain I was describing. So, each time I went through a "flareup" I would see my General Physician who would prescribe me pain med, muscle relaxer and anti inflamatory to take, thinking I had pulled a muscle. This has gone on for a period close to 8 years. I have previously been diagnosed with depression and take wellbutrin for that. I have also experienced other symptoms, which I did not link to any of the back pain I am experiencing...until now.

In the last year, the pain has begun to affect my daily life. I can only walk 30 minutes each day before the severity of the pain in my hips causes me to stop. I love to work out and am now afraid of doing so in fear of "pulling a muscle." Due to this, I visited with my Dr. and explained to him that my back and hips would not hold me in a bent over position (which is how I blow dry my hair) and that when I brush my teeth in the morning or put on makeup, I have to either sit on the sink, or prop my left foot up on the counter because I can't bend forward and hold the position. The "tightness" I feel in my neck and shoulders that wraps around to my collarbone, I simply assumed was stress related and never complained about it. After doing blood work and x-rays, my Dr. sent me to a Rheumatologist who took all of 15 lovely (sarcastic) minutes to diagnose me.

I'm not sure this is what I have, though after doing some pretty in depth reading, it certainly explains MANY other things I have been experiencing in addition to the severe lower back pain.

I have located a very thorough and compasionate Dr. (Rhuematologist) and am working on getting in to see her. In the meantime, I take two Vicodin a day for the pain. One in the morning and the other, I break in half. One half mid morning and the other early afternoon. I take no more than that. Due to my sleep issues, which is simply that I don't sleep. The pain ...I sometimes can't curl into enough of a ball to relieve the pain in my back. I am up every hour on the hour tossing and turning. I made the mistake of having my husband rub my back (VERY LIGHTLY) the other night before bed. BIG mistake! Woke up hurting so severely I took an additional muscle relaxer and anti inflamatory to get back to sleep.

I had originally thought the pain in my hips was the possibility that my injury had caused rheumatoid authritis. Negative. Everything is negative. My blood counts are all within normal range. Auto immune tests, negative.

So, I am having to look at this as a possibility and presume that's what I have until I can get in to see this other Dr.

The doctor that diagnosed me simply prescribed me Klonapin, which DOES NOT keep me asleep and I feel groggy the next day. Keep in mind, that's on just HALF a pill.

I am frustrated. I am not the sit around type, as I'm sure many of you are not either and can relate to the irritation I feel over sometimes being confined to the bed or couch due to pain. It's not me. I like to run and hike and horseback ride and I'd CERTAINLY like to walk for more than 30 minutes at a time!!

So that's just a little of my story...

I have a very good friend who has this condition, and she is filling in some blanks for me. Helping me out quite a bit.

Again, thanks for the info.


Fantod - December 9

Sorry that you had an appointment with a rheumotologist with an attitude. We've all had at least one experience like that. I'd encourage you to report them in writing to your health care insurer and also to their hospital affiliation. You could save another patient from going through the same experience. The doctor should either decline to diagnose/treat FMS patients or be professional enough to keep his sarcasm to himself. And, he did the bare minimum in terms of prescribing medication to help you.

My FMS started when a disc failed in my lower back. L5 has left the building and the neighbors are packing. I cannot stand or walk for long periods of time either. Don't ever let any doctor tell you that the pain you are experiencing is not real. I had a knock down drag out fight with one of my orthopedist. He decided since he could not account for my level of pain because the MRI didn't show anything much different than surgery was the answer. I did not have surgery and found someone else to treat the problem. You should see about using the Flector Pain Patch for really bad days. This is a NON narcotic patch that only works where it is applied. It is very effective and has been a godsend for me.

I also have hip pain which comes from my back and also from burisitis. I have bursistis in both shoulders and hips. Bursitis is pretty common among FMS patients. You should be checked for it. In addition to PT and treatment for burisitis, fresh pineapple contains an enzyme which helps break it up. If it turns out that you have bursitis, eat as much of it as you can stand. If you don't like pineapple, the health food store can help you with enzymes in a capsule that will achieve the same effect.

The common treatment for bursitis in addition to PT is a shot of cortisone. That's all fine and dandy but FMS is an autoimmune disorder. Exposure to steroids should be extremely limited as they depress the immune system. And, with prolonged use, cortisone causes tissue damage. If you do have bursitis and can find a holisitic doctor who uses Sarapin instead of cortisone that would be a better choice. Sarapin is a derivative of the pitcher plant, is nontoxic and is an extremely effective pain killer. I had it injected in several areas of my lower back to break a pain cycle. The shots were not fun but it worked for about 6 months.

You should consider seeing a pain specialist with an interest in FMS in addition to a rheumy. I have both; they work in tandem. The pain specialist has been prety good about sorting out my lumbar issues from FMS.

It sounds like you have Allydonia too. I am very sensitive to wearing clothing, watch bands, jewelry or even being touched. Some days are better than others but I have to be mindful when choosing clothing for the day. Sometimes even the lightest pressure on my skin can really hurt.

If your sleep medication is not working, try Calms Forte or Melatonin. Both of these items are available at the Vitamin Shoppe or in any decent health food store. I use both at night and they seem to do a pretty good job of knocking me out for a while. Of course, it depends on my overall pain level.... Make sure that you understand how to use these homeopathic supplements and any risks associated with using them.

I also have a close friend with FMS and it really helps. When I say I am having a bad day or am too tired to talk she gets it. Let us know how we can help. You care not alone.


axxie - December 9

Hey welcome sherrodguy. There's this website that is for men with fibro, I think you would like to visit if you a search and type in. menwithfibro it should bring you up to it.

As far as I know, from being treated by my doctors all say the pain and what men go through is similar but different. I know for sure being a man and having it, must be real hard to accept as you bear the world on your shoulders and you are define by being the hunter, provider, etc.etc.

Women have those same powerful emotions, but we are somewhat different in our emotions.

Go check it out..... like I said, google menwithfibro all in.

Hope you get a second diagnostic soon. For now soft hugs to you


Lori P - December 10

Hi Karkel, My name is Lori. This is the very first time I have gone onto a forum. I have had fibro (at least diagnosed) for 3 yrs. Been too soo many doctors. Rheum. Gastro. Neuro. Uro. and family Dr. they just keep sending me back and forth, no help. Just sick and tired. Nobody truly understands I guess but u all. I have actually got so much worse. Now I even see a Psych. to take over med management. They don't seem to know, understand, or simply CARE. I have done soo much research on my own, get all my test reults for comparison, try to understand lol, how could we when they don't. I was told to go on a message board with other fibro patients because we can all relate and understand. One Dr. told me that the fibro could even go into remission, wouldn't that be nice!! I went from being a hyper, ever ready bunny to having pain so great it's hard to even move. The more research we do on our own, read what other's have to say, look for new opportunities, the better. Just remember, your not alone!!


sherrodguy - December 10

I am female. I guess I'll have to change my user name!! LOL!!!

When I registered for the website, I didn't realize my username would be attached to my post as my identity. Ah well.


sherrodguy - December 10


Thanks again for all the information!

I, like Lori P, have also been to gastro and gyn. Luckily, they were EXCELLENT and very sympathetic doctors and were willing to put my mind at ease (and collect my money, I'm sure) by doing an upper endoscopy, colonoscopy, and my gyn did an exploratory surgery (lap)which resulted in the removal of endometriosis. This particular procedure was performed January of 09. I was under the impression that the endo was back when the stomach issues returned. I went as far as to call the gyn to see if it was normal for it to return so quickly. I was told it was possible but the next step would be a hystorectomy. Now I realize that the entire time, the stomach issues were associated with the fibro and not an issue seperate.

I did check into taking the Melatonin for sleep, but read it should not be taken by those being treated medicinally for depression.

I apologize. I have probably many misspelled medical terms in my posts!


msgb - December 25

It doesn't go away so much as it will be in remission. It can be in remission for quite some time.



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