Fibromyalgia

[Whispering Winds]

I worked for a chiropractor who was really into the nutritional part of healing as well; (most of them are, but Dr. C was REALLY into it, and the effects it has on us, especially women!) he had a special vitamin for firbo sufferers, of which I am one. They are miraculous, and while I don't work there anymore I have let it slide getting back in there to get them, but call around your area to local chiros and see if one of them might have them. they are called COMPLETE FIBRO-M. They are made by Nurti-West. They aren't cheap, but neither are the prescriptions, and their side effects are enough to scare a person to death. I learned so much from Dr. C about Firbro, he said a lot of it is nutrition. I know I have had it since I was a young woman, and while it doesn't make my life miserable, someone being rough with me, (jokingly I mean) can make me hurt for a long time afterwards, and you are right, which one of you said no one thinks its "really" a disease. When you can just get a gentle rub by someone and it HURTS, its real and the medical world needs to research more WHY instead of "here take this and you will feel better" approach to it. I hope you can find someone who might have these vitamins. Dr. C had women in the town where his office was located that would get really upset if he didn't get a supply on hand for them, and they didn't have to wait for the new shipment. He also told me that if I knew I was going to be doing something really strenuous, take three before I did it, and he was right. . .BIG help. Good luck, and keep us posted!!!

 

[Whispering Winds]

This is fascinating, because when I was a teenager my feet would absolutely kill me, and I was told I was flat footed. I didn't believe it, beause my foot print when wet was perfectly arched and didn't look like the flat foot pics I had seen. Now, you ladies are talking about your feet killing you, and how it led to this diagnosis, and I know I had it when I was a teenager. I was a change of life baby, maybe that was a contributing factor.

I did go to a foot spec. when I was working on concrete 8 hours a day, and the pain was horrible and he did say my feet were almost deformed, but after he made my orthodics, the pain went away and I rarely if ever have it like I did back then, and I haven't worn the orthodics in years . . .do any of you get a cramp in the arch of your foot at night? I have been having trouble with that, but also love to go barefoot and since I work one day a week now at the Real Estate office (I am an agent) and wear shoes with low heels, I thought that might be it . . .it is so good to hear someone else talk about these pains, its hard to describe to people too, because even my husband who is the first to suggest to me that I might have Fibro just can't understand the "sore skin" explanation, but that is what I suffer terribly with. . .someone just being kind and patting me on the back can send me into spasms of pain for a long time afterwards. I do have joint issues, but I think that is just arthritis a little bit, and thank the Lord I don't have problems getting out of bed in the morning, but does that hot bath at night help a long day's ailments!. . .be care with the OTC pain relievers too, they attack our liver and other organs. . .I am going to try the vitamins that one of you mentioned, or supplement what I already take too; I take magnesium right now for heart flippies, thought I was going to have the big one, but the heart spec. I went too said he thought it was just a lack of mag., the county next to where I live has no mag. in its water or soil, and people are terribly lacking. . .he must have been right, I have no issues since I started taking it, and he told me you can't take too much, as the body uses what it needs and expels the rest. Anyone else have this issue? I take vitamins from a company I order my cleaning products and stuff from out of Idaho Falls, Id., and know they help me too. . .we need to get back to more natural aids in our daily battle with the body, and not run to the doctor every single time. Male doctors particularly can be very condescending to women and their ailments. If I hear, "it's just your age", or something similiar, I am going to have to say something!!! Sorry, didn't mean to talk so long, but just finding some people who understand is just almost too good to be true!!!!!

 

[HennysMom]

Ugh...dreaded fibro. I've got it - and Hubby has it as well - very rare that a husband and wife have it simultaneously. He was dx'd with it in 1995 and me in 1997 and we both fall into the class of fibro sufferers that have it to our degree of 10% or less. Its horrible.

I've tried every med known there is - every treatment known, conventional and unconventional - and even holistic in my 12 years. So far, the only thing that helps quell the awful burning is Zanaflex 12-16 mgs daily *4mg tablets*(muscle relaxer - been on for 5 years now but it does knock me out) and pain meds for me - as well as having my levels of Vit D, K and potassium and magnesium balanced. Potassium and Magnesium are VERY IMPORTANT if you have fibro - if you havent had any of those tested, including your D and K - do so immediately as they play vital parts (my neurologist checks me yearly). I drink Gatorade and eat a banana at least once a day to help with the potassium issues. Hot baths daily - sometimes twice a day work wonders. I cannot tolerate touch many times so massage is out (as it is for hubby also). VERY LIGHT stretching sometimes can help alleviate the pain for DH and myself - but when I say light - I mean extremely light. They used to say exercise exercise exercise for fibro patients, but not so much any longer. It can help some of the fortunate souls that dont have it to the degree I do, and I'm so very jealous of that fact, I wish it were that simple for us, but its not. Luckily for me both my neurologist and my endocrinologist are on the forefront with fibro treatments and attend all the conferences - not many people have doctors that are up on treatments. More and more they are discovering fibro is more neurologic related - that affects the muscle system - whereas before they thought it was just muscle related, hence the "fibro *muscle/tissue* and "myalgia" *all over body pain*. They're wising up to us though

- thats why Cymbalta, Lyrica, Neurontin and Gabatril all can work for sufferers - they work directly on the nervous system, calming the nerve endings that misfire and send pain signals to the brain. Unfortunately for me - I cant take them as I am so extremely med sensitive due to my fibro - each one shut my system down (bladder and bowels) - something they call Neurogenic Disorder; to which I didnt have until I had fibro. Hubby is the same way but he doesnt shut down, he just is extremely med sensitive.

I will tell you that as a first line you should be tested for Epstein-Barr to ensure you dont have it (it is one thing that causes Chronic Fatigue) - fibro also causes CF but many fibro sufferers are carries of EB. Most fibro patients are med sensitive and develop allergies and this can get worse over the course of your condition (has for DH and myself 10 fold); chronic headaches, lack of sleep (never getting into deep REM stages), and any dental work is very heightened to say the least. Porcelain fillings dont take as well in a fibro patient either - I've had 2 that were the old silver that cracked and had to be redone three times each due to fibro being an issue. For me as well - any changes in weather effect me horribly, joints swell and stiffen - before, during and after the change whereas hubby it affects right before and the day of. Each person is different.

Oh my I could go on and on with issues of having fibro....but I wont - I'll spare you all the gory in-depth details

*12 years of doctors...tends to lead you to know things, sorry if I sound "knowy" or whatever...* Compound fibro with having arthritis, Raynauds, Lupus and small fiber neuropathy, amoung a few other conditions I have - yes.. I"m all set thank you.

I just keep telling myself God has a plan ....if I dont tell myself that....I'd be a heap of a mess each and every day.

Hang in there all of you fibro sufferers - we'll get through it together.

 

[Mahonri]

Fibromyalgia is an auto-immune disease.

It is in the family of auto-immune diseases.

Arthritis is the most common- body attacks joints and bone
Fibromyalgia - body attacks the muscles.
Lupus - (more fatal) body attacks tissues and some organs - can go into remission
Reynaud's Syndrome - body attacks blood vessels in the extremities
Auto Immune Hives - hives can affect skin and membranes, inside and out (I have this)

There has to be a genetic component because I have 3 siblings with arthritis (1 is severe)
1 sibling with Lupus
2 siblings with Reynaud's symptoms (1 severe)

I also think it must be related to thyroid problems because many folks that I know with the above family of diseases also have thyroid problems.

So far only 1 of my siblings has diabetes, but it runs in our family... uncles, great grandfather...

I wish I knew the answer.

I had a good friend that had fibromyalgia for years, many doctors claim it doesn't exist. Her's extended from her muscles into the tissues and eventually she succumbed.

I'm a believer that proper nutrition will help with vitamins as supplements, including diet and exercise... painful as it may be at first.

 

[HennysMom]

Quote:
Yep - I agree its autoimmune - as I also have Graves Disease (thyroid)....and all my issues BEGAN shortly after (with 2 years) of being diagnosed with Graves - also autoimmune.

Mahonri - being a dentist yourself - how many patients do you have that have fibro that have issues? Have you seen that yet - and if so..what do you do? I know for myself, they cannot clean my teeth without putting numbing gel on me first.. Its like electrical shocks for me, its horrible. Teeth are great, gums are great, nothing exposed - my dentist says its my fibro. I never had issues until about 5 years ago, so its a progression thing.

 

[Ferngully]

FMS and health care provider as well.

Medications really are a crap shoot for each individual person, as they are discovering that not everyones FMS is the same on a chemical/biological level. That is why there are people whom a drug may work for and some others it does nothing for.

I have had all the neuroleptics at high doses as well, nasty physical side effects. Pain meds, muscle relaxants, sleep medications, antidepressants, a couple of the new drugs and prednisone

After awhile you feel like a lab rat. The funniest was when the doctor said "here try this, it maybe might work" yup really said that. At that point I quit going to the doctor. The meds did not seem to help. The sleep meds, (giggle) did not faze me. Wide awake. I find I am sensitive to some meds and not others, or they have no effect on me (a time NOT to find out is for and after major surgery, they had trouble keeping me asleep for it and then providing relief afterwards) And I don't drink or use drugs, I am sure they must have thought I did. I take Advil, helps sometimes.


I have found that a good multivite doesn't hurt(not saying it helps), I try to get as much sun as possible, and have learned to say NO. There is a point where you know you are going to pay for having a good day. Stinks to wake up in as much pain as when you went to bed. I have found also that cold will shut my body down. It seemed funny for some like I was complaining about FL being cold but yeah below 70 and I hurt more. I have heat massage mats in the car and a long bed type one. Driving 30 minutes kills me, grocery shopping, forget it I am done for the day then. I think after so many years you resign yourself to the fact that this will be your life. There are times I use a cane to keep from falling, ride the carts in the stores or don't bother to go. Fibrofog is funny around here. "You know your name", "that thing that does this", you fellow FMS know what I mean I am sure. They say FMS is not debilitating, I beg to differ. When you are unable to move, think clearly and function at prior normal levels I think that is debilitating. I know they mean as in life threatening, but still, some "professionals" are not very either supportive, sensitive, or understanding. Enough rant.

to others that you find something that helps you make it through your days and nights. And as a hint, look at some of the ongoing drug trials, cross reference with the FDA permits to see the drugs they are experimenting with. One of the "new" test drugs.......GHB(date rape drug).......NOT! Think you have trouble with fogginess, forgetfulness now lol. And you get to get up and take a second dose in the middle of the night. Think I will pass on that one when it is released.

 

[HennysMom]

Quote:
YEP YEP AND YEP!!! Got me laughing at the "fibro fog" I swear that is the WORST!

I do that to hubby all the time... staring at something then getting aggrevated because I KNOW what it is and I'm ready to cry saying " get me that THING...you know *points* THAT...what the heck is that called?!!" and he goes "A spatula?"

 

[Mahonri]

Unfortunately, there are still MDs graduating who are told that FMS is a psychiatric problem!

Guess you'd wish pain upon all of those instructors!

I don't think enough research has been done.

I've never noticed a problem with gum sensitivity with Fibromyalgia patients. Interesting.

 

[Jena]

Hi Gay Renee

I agree, but I am also flat footed, always have been lol....

For me it was the sudden onset that sparked my concern, I said I am a great walker, and I mean it, and frequently I walk barefoot. I used to walk at least 15 miles a day. I was often more comfortable barefoot, and that is probably due to the flat feet, but I had a bout of severe virus infections about 10 years ago, and then bang!!! suddenly I had this severe problem with my feet. I get welts too, my son says they are hives, and they can be from any kind of pressure, if someone holds onto me, carrying a bag, and I even gave up wearing jeans asI developed large and very painful welts, where my jeans creased around thighs, hips, and even the backs of my knees.

So I know what you feel about touching sometimes.

I keep fighting on but it is so difficult some days. Over here it is just not recognised in most areas. I was amazed when I was away recently and staying near London that I met 3 women who are also sufferers and they get so much info and acceptance up there. The doctors are so clued up. It is amazing.

Thank you all for sharing your experience.

Jena.

 

[HennysMom]

Quote:
welll....

I'm not one to kiss and tell LOL

No, its not gum sensitivity I dont believe for me - its a nerve issue...unless you as a dentist call it gum sensitivity?

All I know is its horrible... I have all 1's for spacing (whatever the highest is) so no recession at all - its strictly from the teeth, but near the gum line...isnt that where the nerves are? Oddest thing, but thank god for that bubble gum flavored gel!