Fibromyalgia

[hippiechick]

Does anybody have this syndrome...If so, how do you deal with it and what meds do you take???

 

[dilloduck]

I heard of this and that it's not very pleasant. Do you have this problem?

I also know it's hard to diagnose and treat but there are many help sites----I think it's also closely related to chronic fatigue syndrome--(yuppie flu)--good luck with it!

 

[dilloduck]

I thought it was more than CFS, is it not the condition of the brain crossing circuits which the said person feel actual pain? check it out dillo!

you're right but when I researched CFS once there were many cross references to fibromyalgia and many belonged to the same support groups. Thought she might get more info if she searched both conditions--yes more pain is associated with fibromyalgia !

 

[hippiechick]

I heard of this and that it's not very pleasant. Do you have this problem?

yes I have recently been told by a Reumatologist that this is my problem...I was sent to a specialist a few weeks ago for a nerve study for possible Neuropathy, which the test proved nothing is wrong in that department. I will see my doctor tomorrow to see which direction we will go next. I am presently taking Lodine which is an anti-inflammatory and Paxil to help me get a full night's sleep. I am in constant pain.

 

[hippiechick]

I also know it's hard to diagnose and treat but there are many help sites----I think it's also closely related to chronic fatigue syndrome--(yuppie flu)--good luck with it!

yes you are right about CFS...they are very closely related. In fact I have been told that I'm eligible for disability but in order to receive compensation, I should file for the CFS instead of FMS because it IS so hard to diagnose. You are also right about the yuppie flu...lol...I do feel as though I have the flu all the time. You know when a person starts an exercise program it's normal to feel some soreness...so jump back in there and work the soreness out...Not in this case. The more exercise a person does, the more sore he gets. It's like there's no working the soreness out. I try to do small amounts of treadmill, ABLounger, pilates and yoga on a regular basis but if I exercise 3 or 4 days per week, I am so sore I can barely get around. It then takes me a few days to get over that...then back to square 1..."They" don't know exactly what causes it and don't know of a cure for it...:huh: BTW...love all the smileys....

 

[hippiechick]

I thought it was more than CFS, is it not the condition of the brain crossing circuits which the said person feel actual pain? check it out dillo!

Oh believe me, it's much more than Chronic Fatigue...It's real pain...it's stabbing, burning, piercing, throbbing, nagging...

 

[hippiechick]

Is the Paxil effective for sleeping? I was unaware that it was used for that purpose also.

well actually Paxil, as you probably already know, is a anti-depressant for stress but "they" have found that certain drugs such as Amitriptyline and Paxil help with some of the pain associated with this syndrome. As for me, I took Amitrip...for a few weeks, 2 different strengths and it did not help me at all. I took 10 mg Paxil a little while and still was unable to get a good night's rest...always sleeping in REM...I am now trying 20mg Paxil and I still really see no difference. I feel as bad today as I did last May...I have some Ambien that I use from time to time. I also have some pain killers for the pain. I just would love to figure all this out and get back to normal, if I ever will...

 

[hippiechick]

Thanks guys... I really like this dude...Lots more smileys than at another site I go to...

 

[hippiechick]

Welcome, and welcome to the board!

thanks...be back soon

 

[dilloduck]

thanks...be back soon

Dittos on the welcome--most importantly hang on to hope---having a condition that is difficult to treat is NOT a life sentence . ( I like the dancing dude too )

 

[clumzgirl]

Wow, I can really sympathize. I've never been officially diagnosed, but since they can't really pin it down, I figured it wasn't worth going to specialist after specialist.
I've had it as long as I can remember. When I was little we thought it was growing pains, and I can remember my mom rubbing my legs when I couldn't sleep from the pain. Well, I'm now 25 and I'm pretty sure I stopped growing a long time ago!
I don't have as bad of symptoms as you do. I just get a deep aching several times a week. Sometimes I get lucky and go a whole day without pain. Some times it's in the arms, then the legs, then the neck...it moves around.
I got scared of taking so many pills (ibuprofen and Tylenol) so I switched to Aleve, since one or two a day seems to keep it in check. When I can't sleep I take melatonin, which is natural substance produced by your body anyway. You can find it at any drugstore. Non-addictive.
I also recommend HOT baths. For some reason, that quick submersion in really hot water relaxes the muscles to where its manageable.
I wish you much luck. Keep me posted on what you find out.

 

[JOKER96BRAVO]

Does anybody have this syndrome...If so, how do you deal with it and what meds do you take???

My mom has it. Not pretty, she basicly just gets sedated enough to not care.
It's also accompanied with other diseases, or progresses untill immune system
gets weak and allows other diseases in. My mom has 4 sleeping disorders, Lupus,
They think she has MS, Memory loss. a whole lot more, I feel for anyone with
Fib.

 

[MsMandalyn]

I try to take the least amount of meds as possible. I figure I am already sick and the last thing I want is a bunch of side effect and lasting problems from over medicating myself. I take a variety of vitamins and small amount of a beta blocker (not that great for you) for P.O.Ts.

 

[freedombecki]

Hi, MsMandalyn. After years of screaming out loud pain, I was wide awake one night 7 or 8 years ago, watching stupid 3 am sale-a-thons, which was all that was on. One channel hop had a lot of older people giving the thumbs up to a product, and I thought, oh, yeah, right, and it'll cure my fibro too. They were talking about arthritis alleviation without meds, neural pain, adult onset diabetes, and a lot of other autoimmune issues that went "poof." I have a PT Barnum attitude on just about everything, and was getting a little fed up with it all when onto the screen springs an aging pop star, Pat Boone, who also sang one of my favorite oldies--"Love letters in the sand." He was talking about how he was about to give up his golf, when he heard about a product that helped people get their lives back, even when dealing with the stiffness of arthritis due to aging. I thought to myself, "Well, that's nice. A guy like that is so well-off he probably wouldn't plug a product unless it had something to it," and I thought about switching channels again, pretty soon, too. But then he mentioned that his wife had fibromyalgia. He said that the product benefited her, too.

Now, that got my attention. So I heard another sales person rattle off a half dozen oriental and middle east remedies and helps, quite a few known minerals and vitamins, and how they'd taken the guesswork out of being able to use your faculties to full good use with their product. They offered a 10-day supply for the cost of shipping, which was under ten dollars.

By then, I was pretty tired of neurontin blocking not only my pain at the spine, but my math abilities as well, not good for a business owner. I thought, well, what did I have to loose? One more week of screaming out loud pain is probably just going to pass anyway, but I thought maybe since Pat Boone didn't have anything to gain or lose by using a product, and he was known for his principles and faith from years ago to now, and I figured why would he not tell the truth? So I took the gamble, sent in for the Vital Factors' free deal except for postage, and on the 3rd day, I stuck my math-robbing neurontin on the shelf for really, really bad days if I had any ahead. It took 10 days to get to Wyoming, where I lived then, and 3 days after I ran out, I had pain again. Then the month's supply arrived, and I started again, and a lot of pain went away. This time, a week after I got the month's supply, I called them up and asked to be put on the 3-months-for-the-price-of-2 deal, and I haven't had the screaming out loud stuff except for once when I went on vacation and forgot to bring them. The pain restarts in a few days after you quit, because it deals with the autoimmune issue today, not yesterday, and not tomorrow. You take 5 days consecutive, then take 2 days off to give your body a break. Your math comes back to you that you lost while taking the blocker. You get your life back, because you can not only play again, you can think, too. A company by the name of MDR also has a website that explains a lot of thing about diseases of aging. We don't know exactly why some of us get fibromyalgia, but we know what researchers have found--they've found a trail of a person who had a sequence of illnesses, one of which included the Epstein-Barr virus (mononucleosis) in 80% of the case histories in one study. The thinking was (back when I was reading up on fibromyalgia) that if a person got a just so string of viruses, the disease would appear under stress, which could be just about anything from winning the Miss America Pagent to falling off a ladder or having a truly bad case of the flu.

No matter how you think you get it, though, your doctor can tell if you have it if you have pain at certain points in your body where bundles are, and pressing them can make you feel like you just got whacked with all someone's might on the pressure point, when actually, they pressed gently but firmly.

At their website, there is a published list of ingredients. Some of them are not available in America, and if you purchased the right amoung of each of them separately, your supplement costs would be $400 per month. Also, overdosing or underdosing is a problem when you self-administer some of the products if you buy them separately, and that could wear down some of your organs if you get too much, so it's much safer and much cheaper just to buy the one product than it is to buy all of them and risk your health by playing doctor doh. MDR stands for "Medical Doctors Research Institute, and is located in Florida, although I can't remember the city name exactly, maybe Sarasota or near there. Vital Factors has its own website with the offer and MDR has its own website--just put a dot com after each name in lowercase letters after www. and you're there.

You're on my prayer list for healing, MsMandalyn, which will be sooner rather than later if you call their 800 number, also listed at their website. They will assign you a helper, and he or she will answer your questions like "Is it safe with...(fill in prescriptions you are taking), etc. Best wishes.

I got my life back, and it rocks.

And I agree with you. Melatonin is a great sleep aid. It's even greater when you don't hurt all the time.

 

[jamesrustin]

Increase the content of Vitamin E in your Diet. It helps against the symptoms of Fibromyalgia.

 

[Katzndogz]

I have a friend with Fib. She was doing okay, until she went to a medical marijuana clinic and got a prescription for pot. Then her regular doctors refused to treat her until she gave up the pot. She opted for pot and is now basically bedridden smoking pot all day. She lives with her 86 year old mother that has to help my friend get to the bathroom. When Mom passes, my friend will have to go into a care facility.

To heap insult on injury, the pot haze in her room is so thick, her beloved little dog won't even go into her room so she doesn't even have the companionship of the dog anymore.

 

[bobcollum]

^ Has some pretty unbelievable stories.

 

[Kooshdakhaa]

^ Has some pretty unbelievable stories.

Yeah, but I don't think you could make something like that up. I think it's true!

 

[freedombecki]

Yes, it's probably true. Fibromyalgia is a terrible disease, and there are a lot of things you can do for it, I've found.

The trouble is, everyone I have ever met who had it has their own set of general symptoms, and as bad as my case was, I have much less pain than when I first succumbed. I have a little nutritional knowledge in my background, but it took 5 years for me to realize some of it is megadoses of certain vitamins that helps. Taking Vitamin E exclusively does not alleviate the pain of fibromyalgia. Co-Q 10 takes away about 7-8% of the pain. E does help, as does the product known as Vital Factors, which contains Vitamin E and other products that alleviate a lot of autoimmune issue-type diseases.

Thanks, everyone, for reviewing this thread. If you have a loved one who has the disease, keep in mind that while they appear to look just fine and may even be smiling, they may be smiling in the attempt to conceal screaming out loud pain or the hostility toward the debilitating effects of "pain killing substances" that not only block pain, but also removes a person's ability to do math. If the person does retail, that can cause serious customer issues, making a $5 error on every other transaction.

The disease is harsher than I can even describe. I'm so sorry for the woman who is taking pot, thinking it will stop pain. Her distributor is a distinct quack in my book. Katzndogs, your pal is on my prayer list. I hope she gets some real help or a practitioner who can tolerate a human error choice or two. He or she can still help her if she will reach out. It almost sounds as though she were addicted. It can do in a person's capacity to reason, along with fibrofog, that's a real barrel of worms.

Even so, she is not responsible for her condition. She needs love and an occasional back rub from someone who can ask where and how deep to rub and to tell when it's too much or not enough massaging. She needs to be reassured that no, it's not contageous, it has a hereditary component combined with a little bit of aggravation such as a fall off a ladder on painting day and landing on the back, car accident aftermath, or any kind of stress, not necessarily too much stress, but stress nontheless.

Just sayin.'

 

[MHunterB]

I think one of the things people without FM don't easily realize is the debilitating effect of constant pain, even pain that doesn't seem to be associated with any type of injury.

It's like trying to add colums of numbers while a fire alarm is blaring loud enough to make your teeth vibrate..... a couple days of that and you get pretty unhinged.

No, I don't have FM - but I've had tendonitis in both thumbs at once. Not sure how that happened, but it was awful. I knew nothing was really all that wrong, but couldn't even hold a cup of tea. Just couldn't block out that pain.

My sympathies to all who suffer so - and hope that you'll find something that works for you! It does seem to be very idiopathic.