Fibromyalgia

Hi!
I have fibro, a back injury, IBS, etc. etc.... Everyday it seems something new pops up Fibro related. I was diagnosed back in 1998 but really did not suffer the greatest until I was injured at work when a box fell on my back. Surgery did not help and I have been out of work since. My days are filled with pain..how about you? I go from one flare to another! It will be good to hear from others who have this.

LH..
Omigosh, I didnt know you had this.. I too have been diagnosed with Fibromyalgia a couple of months ago, its horrible, especially with 3 kids! I feel horrible most every day since I've been diagnosed with it. It literally feels like I've been run over by a truck most days.
This thread is good, kinda like a support group
I've found that most medicines or muscle relaxers do not work, and the only way they do make me feel somewhat better is if I double the dose.
What are you guys taking, or are you taking anything?

Hello partners in pain. I was diagnosed with what is now call Fibromyalgia in 1981. The exacerbate matters, I had two back surgeries prior to that. I can't help but notice that I am the only male posting at this time, which is okay. I do get frustrated at times when the local hospitals will have FM seminars at their "womens centers," when a full 25% of FM victims are male. I managed to get through a military career, college and some graduate school, when finally my body just started shutting down, i.e. days without sleep because of pain and then just total exhaustion. Obtaining a heart blockage did not help matters much, either.

After teaching the Veterans Administration what FM and mysofacial pain syndrome is, I had to go through the same issues with social security, but like they say, third time is a charm. I am now receiving 100% VA Disability & SSA. My doctor is very compassionate and we have reach the right combination of drugs that I can stay relatively comfortable. My biggest fear is what do I do when he retires? I have had doctors tell me (1) that I should be over this by now (2) it is purely a figment of my imagination because there is no objective test they can do to prove/disprove it (never mind the trigger points bulging from my back and neck) (3) only women can get get this, blah, blah,blah. To each person who has some sarcastic remedy for this damnedable disease, I tell them to go on a lecture tours, make a lot of money and proove to us the he/she has found the cure. Then and only then will I give back every dime of disablility. I was forced into permanent retirement when I was fifty-two. There was this nurse at church wo had the audacity to say that I didn't look disabled, even though I sue a cane to walk. I had no intention of having a couch potato retirement, but here I am. Drugged, tired, sometimes snappy with those whom I love dearly and have been going through some major depression issues recently. Time to change THAT medication, I guess.

Can you believe it, though? I still think that the Lord has blessed me beyond what I deserve. That is the only thing that keeps me going.

In three weeks, my wonerful wife and I are traveling to Minnesota for a family reunion. Driving for any extented period can be very painful and my wife doesn't drive. Trips I used to make in a twelve hour day, I now have to plan on two six hour days, plus a motel room. Then my in-laws tell me that I should have been able to make it in one day! Some day, some way, I'm going to take a branding irons to the next one who says that to me and when they say how much it hurts, I just tell them, "You can do it."

Well, thanks for allowing a male voice to vent. I pray that none of you are afflicted for twenty-four years.

Have a nice week-end.

Just ol' Sven

I do not know too much about it, but my girlfriend's mother has known for quite a while now that she had fibromyalgia, through trial and error she has found the right nutritional formula to alleviate some of her pain. She is quite healthy now and she has done a lot of research on this subject, I will ask her for any information that she can share.

God Bless.

About a year ago, my girlfriend's mother sat down with the family and explained some of the stuff that she has learned. Her husband took some notes. Here are the notes that he took:

FIBROMYALGIA NOTES



SYMPTOMS

• Pain (everywhere or anywhere, any time, all intensities, etc.)
  • Myofacial tissue
  • Trigger points
  • Poor O2 availability
• Smells - certain ones are bothersome, others can cause nausea and headaches
• Hormone fluctuations cause imbalance / problems
• Often occurs with white women, about 6 months after 1st child
  • Depletes body of nutrients
• Fibro Fog
• Irritable bowel
• Sleep disturbances
  • Poor sleep cycle (awake in 3rd stage)
  • Restless legs (H2O, Ca, , helps)
• Yeast Infections
  • Avoid wine, cheese, bread, tofu, and other aged foods
• Sensitivity to cold (need Ca)
• Renoids syndrome (hands turn tinges of red, blue, pasty white, and nail beds can become blue); Need O2

NEEDS

• Lysine (for viruses, shingles, )
  • Found in shellfish: shrimp, oysters, mussels, lobster, etc.
• B Complex (to feed body)
• B6 (for serotonin)
• 5HTTP (for nervous system). Take with B6.
• ____________
  • Deep-sea cold water fish: salmon, etc. (not pond fed!)
• Sleep
  • Milk, Honey, almonds
  • Darkness, comfortable and cool
  • 5HTTP
• Foods for Nervous system cycle:
  • Tryptophane - 5HTTP - Serotonin (29 types) - Melatonin
  • Turkey, bananas, peanuts, __________ , __________
• Morning - to awaken brain
  • ½ apple for malic acid and boron
  • Potassium
• Headaches due to pressure changes (1/2 can coke and 1 aspirin)
• No White Sugar
• No White Flour
• No Stress
• Stay close to God

allieisme,

I notice that you are from Arizona, so is my girlfriend's mom.

I can attest that whatever she is doing is working for her.

I remember going over to their house, and she was often in bed not able to get up. She also seemed very tired. Also, I remeber there were times at Church, when her husband would have to slowly help her up stairs.

Nowadays, I never see her in bed unable to move, she always seems full of energy, I never see her struggling up stairs anymore, and now she is working full time as a school nurse.

I do believe that different things work for different people, but I think that she is of the opinion that medications are not the answer, but rather there are natural products that will help.

Anyways, I'll try to share some more info, or maybe she will come on here sometime if she finds the time.

I hope everybody here finds something that works for them.

I developed fibromyalgia at the age of eleven, possibly due to another joint/muscle disorder. Over the years I have had different symptoms come and go, with som e symptoms being so severe that I never finished high school, was not able to get a drivers license, and for a few years I could not read. I have a applied for a disability pension as I haven't been able to find any work that I can sustain.

I don't take medication anymore except for the occassional painkiller/anti-inflammatory. I have readjusted every bit of my daily living to accommodate my illness and get the most out of life, and this is what works best for me.

There was this nurse at church wo had the audacity to say that I didn't look disabled, even though I sue a cane to walk.

Click to expand...

It really bothers me when I hear things like "But you look just fine!" People are very uninformed about diseases like FMS. And some who are informed, still don't believe it. My own sister recenly made the comment that I should start cleaning houses for a living. I have trouble cleaning my own house. You would think that after seeing me so ill for so many years she would 'get it'. I think chronic illness can be a really difficult concept for healthy people to grasp. I recently saw a link in these forums to something called the Spoon Theory, about a girl with Lupus, that I think puts it into perspective very nicely:

http://www.butyoudontlooksick.com/spoons.htm


-ever

My mother has FMS quite badly, where she has lost use of limbs for prolonged periods. I have been trying to convince her to try the medicinal marjianna spray that you can get in Canada as I have heard it can really reduce the pain symptoms but she is still too afraid of the stigma (Even though it is totally legal and you don't smoke it) - they are introducing the same thing in the UK - has anyone else tried it and is it good for FMS?

I have it quite badly too.. I take Soma which is a muscle relaxer 4 times a day, and then vicadin as needed.. I sleep terribly, and it just stinks!
But I do know that whatever the reason I've gotten this is to share my stories with others, I do think that is God's intentions

Well to tell you the truth LH, it only works while it is affecting my body, and I dont know how many hours the medicine is supposed to work for, but as long as that is, that is about how long it works, so sometimes I have to take more than 4 in a day. I just went to my dr yesterday and he gave me a medicine he said it was a anti depresant, even though I'm already on those, he gave a perscription, I cant remember whats its called, but its to help me sleep at night.. I sleep horrible at night and I wake up constantly with horrible dreams.
Does anyone else have horrible dreams, I mean that way you up and you think your still in it? I dont know if it is the medicaiton or what
Also LH if you take Soma, depends on the dose, but you might not be able to drive, its one of those drowsy drugs, and I also notice if I take mine too close together, I get like this drunk feelings and its hard to walk, so obviously I try not to take them so close together.

For a non-chemical means of dealing with fibro, I highly recommend the Nikken products.
I found this online. http://www.nutritionsandy.com/FMS story.htm

The insoles go into shoes and are magnetic... the best of all brands is Nikken.
(I have them, and i say that EVERY human being needs these.
www.nikken.com/magsteps

There are Nikken persons throughout the world, and they have free introductory get-togethers to see the products and to experience them, for free.

Would you be willing to try something FOR FREE, that might take your discomfort away?

You go to one of the get-togethers, one of them will loan you the magstep insoles for a week, and no obligation beyond that.

I don't want to say more, lest I come across as a commercial. If you are willing to try this FOR FREE, send me a PM and I'll find out where a get-togther is near you (My Mom is one and I am too sorta).

One of my friends from church is bugging me about a chiropractor, I dont like going to those, I dont know why, I just dont.
I've been working out lately, I hear thats a good suggestions when your not quite feeling so great, at first it made me more sore, but I've been working out steadily for a couple of weeks, and the pain is kinda starting to go away..

Has anyone had their doctor perscribe a steriod for this?
My doctor did the other day, its called METHYLPREDNISOLONE, its a six day pack..
I was just wondering if anyone else had to take this?

Wow, I was looking at the "Physically Challenged" threads, just hoping to see something about fibromyalgia, and when I did my heart skipped a beat! I haven't looked at all the ages that posted, but I believe I'm the youngest one, so far that's said anything, that has Fibromyalgia. I'm 16/f/NC.
Hearing everyones descriptions, about "feeling like I've been run over by a truck", "pain filled days", and "Wow, but you look fine!", I've used, or heard. My mom has Fibromyalgia, too. Along with other sorts of pains, and things.
Right now I have a list of things I have.. Some stuff is, Chronic Fatigue Syndrome, Mitral Valve Prolapse, Arthritis, and I have migraines alot, and I'm usually always sore, I bruise easily, too. Like someone said, I have more bad days than good. I'm constantly nauseated, but rarely throw up. It's just an on going all day thing. I get random pains on days, all probably fibro related, and something new always has to join me. Lol
It's so awesome to see that others have it, not because they have it, but because I can relate to them having it. I hope to talk to some of y'all more. I'm usually always open about my stuff, and never back down to questions.
To go back to what someone said, about people saying "Oh, but you look fine!", I've gotten that, and so has my mother. Sure, we look fine, but we can always cover it up most times.
My mom, has mitral vavle prolapse syndrome, where the blood, goes back up into the valve, back to the heart where it's not suppose to go, it backs up, so to speak. It's hard to explain unless you have it. Which thankfully I don't, I just have the prolapse part. I have some pretty scary moments sometimes though. So does my mom. She can get so weak.
Anyways, to wrap this up. I'm so glad that I found this thread!
It's nice meeting all of you.