Anyone here have Fibromyalgia?

[eggcetra_farms]

I take a calcium channel blocker called Varapamil for the Raynaud's. It seems like it helps out the purple coloring but does nothing for the cold. I think it's kind of like putting a fresh coat of paint on a house that's falling apart. It's covering up the problem, not fixing it.

 

[chickenlisa]

This is really interesting. My mom has Fibro. I've never been tested and I hate going to Drs. I do have Raynaud's syndrome-as soon as the weather drops to 40 degrees out, I get white dead looking fingers and they stay like that for a long time-even after running under warm/hot water. I do live with constant pain in my right shoulder and neck area. I get a stiff neck on that side very often. I go to a chiropractor for that and he told me not to sleep on my stomach ever. I get a very sore hip every hew weeks and it just burns to walk or touch. Low back pain almost all the time. I wake up sore in the morning most days.
I did have Lyme's disease about 12 years ago and Dr said it was caught early and gave me antiobiotic for a month I think, and said it was gone then.
I hear you guys when you say about mucking out the chicken pen and then hurting for days afterwards.
Heat is my friend. I love sunny warm/hot weather and hate cold days, snow, rain, and anything that makes me cold.
I've never thought any of these things could be related. Not sure if they are or not., because of the lack of a real test for it. I always just attribute my pain and lack of energy to being too busy-having 3 kids still at home (2 grown and out of the house now) and having alot of animals to care for, and a part time job substituting at our elementary school.

So I'm still sort of at a wait and see place...not wanting to go to a Dr with no real symptoms of anything new and maybe them not believing in my aches and pains and aversion to cold. They already know about the Raynaud's...and didn't seem concerned about it. That's been going on for about 4 years now. I'm 44 BTW.
Lisa in NJ

 

[chickenlisa]

Just a question this evening...I'm going to my Dr in the morning and wanting blood work to be done to see if I have Lyme or something else...and want to know if anyone has any advice to help me make this Dr see that I'm not just getting older or doing "too much" or having too much "stress" in my life. It may be complicated by all those things, but I'm not me anymore. Too achy, too forgetful, too fuzzy headed(ADD like), cold, tired out...etc. I'm not old enough or doing so much that I should feel like this and not like me. I've thrived on a high level of activity all my life and my busy lifestyle should not make me feel awful. Its got to be something else going on. Anyone have any words of wisdom?
Lisa

 

[Montanna]

I also had the tests for Lyme disease, Lupus and many other tests, but mine was finally diagnosed as Rheumatoid Arthritis.
The Fibro and RA are both considered the "But you don't look sick" diseases. I was diagnosed about two years ago, but upon looking back, I have had symptoms for several years, maybe even years and years.

My chickens are therapy for me! Even though ChickenBreath takes care of them during this cold weather. I still enjoy them and I am looking forward to using my new incubator! I love babies! I promised ChickenBreath that I would wait until January. (January 1st sounds good to me!)

Skeeter AKA Montanna

 

[LoneCowboy]

Well hopefully you will have a good Doctor. I went to my doctor for years and asked several times, why do I feel awful all the time. He never really listened. Focused on the one complaint and went on.

One doctor gave me Vioxx for my carpal tunnel. Didn't do squat for my hands, but boy the rest of me felt GREAT!! I horded these pills and only took them when I was really bad.

Then another Dr. gave me Bextra for my feet. Boy oh boy, life was looking up for me. That was even better!! I even told my doctor that. He just said here take them all the time.

Still didn't bother to find out what the whole problem was, even though he'd diagnoses me with most of the other problems that go along with it. Then I got married, and had a major flare. The doctors here in Colorado seem to have more time to figure things out I guess. Had me figured out in no time. However, all the good drugs have been taken off the market, and I can't find anything that works as good as Bextra did.

They first test for Lupus, Lyme and all those. They have to illiminate those types of things first. Then they check to see if you are sinsitive in X number of trigger points. (can't remember the number) Anyway, for them to diagnose you with Fibro, you have to be sensitive in a certain number of points.

Good luck, I hope they figure out what's up.

 

[gritsar]

I was going to quote quite a few things said in this thread, but there were so many I couldn't keep track; so I'll just throw my 2 cents in.

I was diagnosed with fibro. by a rheumatologist in 1996. I first had symptoms in 1986 after the traumatic late pregnancy and birth of my second child. There is one theory that says you can carry the tendency towards fibro. for years and have it triggered by a trauma to the body. Pretty much the same as people with MS having flare ups after upsets of one sort or another. I believe it is important to get diagnosed by a rheumatologist and not let a general practioner diagnose you as a easy way out for him/her. A test of your trigger point sites is important. I test positive in 17 of the 18 possible. I also had a slightly positive ANA back in 1996 and now it is completely normal, so we're still scratching our heads over that one. I've been tested twice for MS, because as my fibro. doctor used to say I have a 'square type of fibro. that doesn't fit in the usual round holes'. I had to leave my excellent fibro. doctor behind in NC. The only doctor I have found here that claims to be a fibro. specialist turned out to be one of these I'll run alot of tests and be able to tell you absolutely nothing kind.
Now I see an internist for all my health care and while he is still a little "shy" of my fibro. he is at least a caring doctor that is willing to listen and believe that I know my body better than anyone else.
My advice to someone dealing with a new diagnosis of fibromyalgia:
1. Take the NSAIDs (non-steroidal anti-inflammatory) if you can and want to and more importantly are willing to deal with their not so trivial side effects and risks. Some peope with fibro also have to contend with very touchy GI tracts, like I do. Celebrex and many of the other NSAIDs are really meant for inflammation and the thing that sets fibro. apart from say...arthritis, is that there is NO inflammation with true fibro., so ummm...what's the point? I think doctors are scared of prescribing narcotics and turn to NSAIDs instead. My doctor and I have an agreement. I get a Rx of 90 darvocet a month. I don't go over that limit and the Rx continues. Some months I don't even use one, some months all the darvocet in the world isn't going to help me.
Recently he added Flexeril. It helps with the muscle spasms, but more important it's one of the few drugs that will knock me out and sleep is the #1 best thing for fibro.
2. If you find yourself with an uncaring doctor or even worse, an unbelieving one (what planet do they come from???) get another one!! Sure medicare rules are strict, but if you learn them you also learn how to work with/around them. Finding yourself with uncaring relatives and/or friends is worse. How I wish I could take every uncaring relative of a fibro. sufferer and shackle them with 40 lb weights on each arm and leg. Now walk a mile in my shoes, ya idiot.
3. Back to sleep again. Do whatever you have to do to get good sleep. If that means replacing your mattress, sleeping alone, whatever, do it. Warm water therapy is great too. Medicare will pay for swim therapy with a Rx from your doctor.
4. Don't overdo on your good days! This is so dang hard to adhere to, because so many things have to be put off when you aren't feeling good that you want to do everything possible on a good day and that just creates a vicious cycle. Twenty-plus years of dealing with it and I still fall into the trap of taking extra advantage of my good days; but I'm getting better at it.
5. Keep good track of your symptoms, what brings them on, what the weather was like then, etc. It'll help you and your doctor to better understand the beast. Me and my doctor are still looking at other possiblities because my fibro. still doesn't want to go into that round hole.
Gee, I said about $50 more than 2 cents, sowwy :|

Opps, one other thing. Everyone is an individual and is going to have individual variations of the same beast. What works for me may not for you and vice versa. I also suffer from 2 other beasts called symptomatic intravertebral hemangiomas (a mouthful) and the dysthymia I have mentioned before. The dysthymia is the main reason I steer clear of homeopathic and herbal treatments. They interfere with my medicine for it.

 

[jackiedon]

I would read everything you can about Fibro. I have found out one thing with drs if you do research and have a little knowledge under your belt they treat you differently. Ask questions!!! Fibro can start due to different things. Some people from car accidents, mine was having Mono at 24 yrs old, or other trauma.

Let us know how it goes,

jackie

 

[gritsar]

LoneCowboy, a couple of things. Others might find useful as well. EffexorXR is more helpful than some of the earlier anti-depressants. They do say Cymbalta is better. I can't take Cymbalta; I tried for two weeks and hardly kept food down the whole 2 weeks. Both work basically by confusing pain signals to your brain. You still have the pain, but the signals to your brain saying you are in pain get blocked or side-tracked so your brain doesn't recognize it as pain. Your doctor or pharmacist can help you make the switch and it shouldn't be that bad. Again the individual thing. If you can't afford the medications, be sure and check the PPA (Partnership for Prescription Assistance). That's what it's there for: https://www.pparx.org/Intro.php
I'm not knowledgable in the medicare rules with SSI because I am not on SSI. I'm on full social security disability, which is different.
And to FarmerDenise, I wish there were more people in the world like you to be so caring to others. Here's hoping you are doubly blessed for your kindnesses.

 

[CarlaRiggs]

I have had fibromyalgia for some years now, but I consider myself about 95% cured because of the protocol I use.
Dr. Paul St. Amand, located here in southern California was very crippled with it as a young man. This is his theory re: fibromyalgia

"We now postulate that a defective metabolism, possibly a kidney enzyme, forces retention of phosphate, which gradually accumulates to detrimental levels in many tissues. This excess induces inadequate energy formation (ATP), cellular fatigue and malfunctions that explain all the symptoms of fibromyalgia. "

In other words, the body malfunctions and is unable to get rid of excess phosphate. The phosphate is tucked into muscles, bones, and joints, causing exhaustion and pain.
My cousin has it, and she pestered me that I had fibro, also. I knew I did NOT!

However, when I developed restless leg syndrome and couldn't sleep, then I decided to see Dr. St. Amand. I had already been to a pain management Dr. who put me on pain medication (I could never work myself up to more than half the doseage

) which did nothing but make me sleepy. St. Amand told me I certainly did have fibro, and gave me guaifenesin, which clears the excess phosphate from the body.
If one is taking the correct amount of the guaifenesin, then about a week after beginning the protocol, you have a mini-melt down

as the body begins to flush out the phosphate/calcium waste. This is how I knew something was working!
My aches and pains are mostly gone, except when I quilt with my longarm quilting machine too much. I no longer have the restless legs and other annoying symptons.
And yes, fibromyaligia *is* an hereditary disease. If both parents have fibro, then all the children will develop it, also. If only one parent, then the chances are 50-50.
Women seem more prone to developing fibro, because their muscle mass and bones are so much smaller. Not as much place for the phosphate to tuck into as a big man.

If you ever had 'growing pains' in your legs as a child, then you've probably got fibromyalgia. Some researchers believe that osteoporosis is the phosphate/calcium build-up in the joints from the fibro.

Here is the website for Dr. St. Amand; he's not only a medical dr., but an endocrinologist at UCLA.

http://www.fibromyalgiatreatment.com/index.htm

 

[chickenlisa]

Wow-thanks everyone. I'll go and talk to him and see what he says and does. Yes, I had horrible growing pains in my legs as a child. Makes me wonder now. I'll print all these posts and reread them too.
Lisa