i have had great improvement in my health by eliminating nearly all carbs after watching the film FATHEAD and reading the book Good Calorie Bad Calorie. I have lost 20 pounds and have a lot more strength and energy, and have mental functions returning to normal as well as much less pain.
Most people eat way too many carbohydrates..at least limit them to less than 100 grams a day, i try to limit them closer to 20 grams a day..I eat all the protein foods that I want from meat and eggs and cheese and i don't limit my fat intake except that it is nearly all from meat products. Avoid highly refihned fats like corn oil ..change your fats to meat fats like butter, cream and lard but limited amounts of olive and nut oils are ok.
Fats feed your nerves and your brain, if you limit them a lot then you are hurting your nerves and your brain as they can't live on carbohydrates. Most people believe the government food pyramid that carbs are good, but you should flip that pyramid upside down..main foods should be meat, eggs, cheese, nuts and other proteins and a good amount of fats..never eat any grains or carbs without fat and limit them as much as possible..borrow the film from the library or read the book..try it for a few months and see if you don't feel better
I agree about the carbs. If people would eat complex carbs instead of processed garbage, they would all feel much better. I know if we pick of some frozen dinner because I feel too lousy to cook, I end up feeling worse. My daughter and her friend made chocolate chip cookies for a picnic they were going to. Of course, I had to try one so I could tell her what a wonderful job she did. And I felt like garbage for the rest of the day.
I had hoped to be able to raise most of our own meat. That way I know what's in it. Not sure if I can do that now, but we'll see.
We decided to postpone our trip to Arkansas. Since, if we do move, we would prefer to wait until the end of summer we have time to wait a bit. I'd rather go when we have more than two days to look around (not to mention visiting friends and family). So we will wait until my husband has his vacation time (don't remember when that is though).
Someone here mentioned Jewish Hospital (something like that) in Denver. It turns out a good friend of mine has been going there for treatment (she has some sort of respiratory illness). She said they have a good rheumatology department and they offer financial aid. Not sure what that entails, but I may have to check into it. I mentioned it to my husband who didn't even acknowledge that I had spoken. I don't think he wants me to go.
In Florida we paid $250 per doctor visit plus tests, meds, etc. He made a lot more money there and we could manage if we were careful. Here, I don't know what to think. It took years to find a doc who would even listen to me. Starting over sounds so exhausting.
First, let me say how sorry I am that you are suffering.
Second, take a second and go to www.gotflax.com and talk to Ellie. She was being poisoned by contamination at her office.
I won't go into the litany of my problems, but suffice it to say that I have spent many years at Dr.s, chiro, and supplements.
I met Ellie at the National Farm Machinery Show in Louisville, KY last Feb. After taking her flax for 2 WEEKS my 2 year old shoulder injury was fixed! I've never found a product that could fix OLD injuries. It's supposed to help arthritis also. I only had that in one joint, but it's gone now. I've got my body back.
But don't give up. I was diagnosed with fibro five or six years ago and I felt like warmed over dog drool for a long time. I didn't do much of anything BUT make it to work (most of the time) for the first year, gimped and skimped and did the minimum for the second year, but for both of those years I spent most of my spare time researching supplements, herbs, etc, and tried so many that I can't even remember them all!
Nowadays I can work outside for three or four hours at something hard and heavy, or longer if it's light farm chore type stuff. If I over do it I will pay for it the next day, but sometimes it's worth it.
I use 3000mg per day of MSM for pain and it does wonderful things for me. The first specialist I went to prescribed pain killers, but I didn't want to take them, plus I had to commute, and think once I got there, so they didn't seem like a viable option.
There is no doubt that eating properly works wonders. It sounds like you already do that.
The main thing I wanted to say is that if you are lucky and proactive, your syndrome may not rule your life forever. I hope that I will see improvement every year, and think that maybe at some point I will be very close to back to normal? I hope that you see some improvement soon, too. It sounds like you are on the right track.
I have livestock and a tiny garden, no time and energy for much more at this point, but maybe starting very small might work for you too? If I have overlooked something you said earlier, forgive me, I read the whole thread but it didn't all stick, lol. Could it be....fog?
hugs, blessings and good luck in whatever you decide to do,
hollym
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"Be Kind...for everyone you meet is fighting a great battle"
Kathleen, First lots of thoughts and prayers. I don't know if you have tried acupuncture, I am very pregnant and having gallbladder problems they can't do what they want which is surgery and they gave me as heavy a painkiller as they could safely for me and my baby and basically said good luck call us when you have the baby. I was terrified, one because the pain is excruciating, and I don't want to take pills that could hurt the little one. I started acupuncture and by gosh it has helped with not only that pain but I have found I have more energy then I did before I got pregnant. I know your situation is way different but I am big fan of reflexology it has always offered me a large increase in energy and less pain. If you end up back in NW Ar I can send you in the direction to a great reflexologist and the acupuncture clinic is a sliding scale fee which is awesome both are in Eureka Springs. Good luck and I hope you find what you need to get on top of things. -Thea
Kathleen, please don't give up! I had already written, telling you that I contracted FMS at the age of 26, but neglected to confirm that I am now a 46 yr old woman who can hike 10 miles without training for it, work for hours outside (no problems the next day), maintain a garden of .6 acres, take care of critters, cook dinner just about every night, and run multiple home businesses (for the past 1.5 years). The FMS is not gone, but I deal with so little pain that I am not limited at all. Again, no drugs, complete diet change, and Kefir Smoothies every day. If I cheat on my diet, I FEEL IT! It isn't worth it to me, at all. I just made up another batch of Comfrey Oil and a batch of Comfrey Salve. Due to the results I got using that? I have (40) Comfrey Plants out there. One is large and blooming non-stop. There is one other, blooming, and another about to. The rest are at varying ages. Due to what my plans are, I can utilize all of those plants!
Susan Weed, Herbalist/Author, and a fun character (hippy, which is cool) has a website and also posts videos on You Tube. She is a well of information about natural healing and teaches how to make infused oils, etc...
I'm sorry, it stinks when one get's so worn down that hope starts getting stomped on. It seems that you are already in touch with what ails you.....
I don't want to add to any complications of your diagnosis, but have you ever been tested for Celiac Disease? It manifests itself in a lot of different ways, and it seems to be the last thing doctors ever look for.
Massage has helped me tremendously. If you can't afford to pay a massage therapist, perhaps your DH could help massage your aching muscles a few days each week.
Are you supplementing with Vit D3? My rheumatologist told me that even here in super sunny Texas half of the people she's tested have come up with Vit D deficiency.
I have found that daytime naps are ESSENTIAL to my comfort and well being. I feel best if I am physically active for a few hours in the morning, then take a 1 hour nap, then work all afternoon at my desk job, and following up with light physcial activity at night before I have dinner and settle in for bed.
I have found a definite link between MSG and my pain levels. If I eat Doritos, for example, I will be in crippling pain for several days afterwards.
I'd be curious to read what other preservatives people have developed sensitivities to.
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"Perhaps I'll have them string a clothesline from the hearse I am in, with my underwear waving in the breeze, as we drive to the cemetary. People worry about the dumbest things!"
by Wendy
I've never tried kefir. I've heard of it but not all that sure what it is. I had a long list of supplements and herbs that were somewhat helpful, but it is expensive to buy them all. And I seem to be having trouble swallowing them anymore. I used to be able to take a whole handful at once. Now it has to be one at a time. My multi-vitamin is a liquid thank goodness.
I'm aggravated again because I tried to see about an appointment with National Jewish Hospital but I need a referral. Which is hard to get with no doctor. Haven't heard anything back from the Arthritis Foundation (or whatever it was called).
I'm just so tired of being so drained. Why should I work every waking moment so I can just collapse into bed? Can't I have any enjoyment?
I guess it irritates me too because it seems like my husband couldn't care less. If it's very obvious that I am hurting he will rub my shoulders but that's about as far as it goes. He doesn't like me taking medications. If I mention that I might be able to work more if I had something for the pain, he doesn't even acknowledge that I've spoken. Of course, if he wants something he just goes out and gets it. I work my tail off and I'm not even "entitled" to see a doctor.
Guess I'm just grouchy because I really hurt today. Big rain clouds overhead (which is awesome!) which seem to make me hurt more. Maybe I'll go stand in the rain.
Kathleen, so sorry you having a frustrating day, with bad weather to complicate it
Kefir Grains? OK, let's start with "yogurt." That is probiotic and the result of culture. Now, Kefir Grains can be compared to a culture, in that they are alive. The resulting Kefir Milk is much more beneficial than yogurt, also probiotic big time, and if you go to the site I listed, you can read all kinds of info about it. It is highly recommended for rhuematic issues (FMS IS). You can make your own Kefir Milk at home, like I have been doing. Once you get Kefir Grains, you put them in a jar, add WHOLE milk (use Goats milk, if possible, otherwise Organic Whole Milk). You place a paper towel, then a ring over that, to allow air but nothing else in. Place the jar in a dark warm place. In 24 to 48 hours, you will have Kefir Milk. You strain the KM with a steel or plastic mesh strainer, remove your Grains, put them back in the jar (more milk, and you let it process again 24 to 48 hours). You can use the Kefir Milk in Kefir Smoothies, which is my preferred use, but also put in dips, sauces, etc... The key is not to cook to gain the most benefit. If you properly care for your Kefir Grains, you never have to get them again. Also, they reproduce, so you can eventually share them with your friends & family.
My DS & DD, one of my stepsons, his girlfriend, one of my sisters, a few of my friends, and the list goes on with who they also shared their K Grains with (getting them from me, initially). Most drink Kefir Smoothies every day, like I do.
BTW- I take vitamins, but no expensive herbal supplements, eat our own organic produce, and also make my own medicinal treatments. I have done the research and drink Comfrey Tea (FDA doesn't recommend this, so you do it based on your own research/risk), Nettle Tea, Lemon Balm Tea, Choc Mint Tea, and Rooibus Tea.
After I gave my present DH some literature regarding FMS and some other health issues I have, his perspective changed. He has become more understanding and supportive. When I need an adjustment, can't afford the chiropractor, DH does it (with proper technique). Massages? Yes, DH to the rescue, since we can't afford that, either.
The biggest challenge to me, besides the pain (of course), was dealing with others who had absolutely no idea how I felt. My first DH wasn't very supportive, and didn't really want to hear about how I felt.
I remember the story told to me by my feisty little relative, tough little lady, who was struggling with abdominal pain. The Dr told her, "Paulina, your pain is all in your head." She dug her spiked heal into the top of his foot, put as much pressure as she could on it, while the Dr. gasped, saying, "Does this hurt, Dr.? No, it doesn't hurt because it is all just psychological pain. Yes, it is all in YOUR head. Oh, do you want me to get off your foot, now?" She released the pressure, moving her foot off of his. Then, she said, "I dug my heel into your foot and you felt pain? Then, I took my foot off, and your pain is gone, right? Now, do surgery and remove the cause of my pain!" The Dr was a Surgeon, scheduled her for surgery, and was surprised to find it was now an emergency procedure. She would have died.
Now, I am not telling you to step on your husbands' foot...
Sounds like maybe you and your husband need to sit down for a real heart to heart then. I think it is very hard for anyone who doesn't have a chronic illness to really comprehend how wearing it is and how painful. I would make a nice dinner on a quiet night when you can talk and try to explain it to him. Let him know that you really need his help to work towards getting better. Men tend to ignore things that they think they can't fix because they are wired to fix things. If they can't get a handle on something they can actually do they feel helpless and so they shy away from it. Give him a way to help you.
If you want to try that golden flax seed send me a pm, a friend just gave me a 5lb bag that she couldn't use and I would be happy to pass it on to you.
Lori, I'll have to try kefir. if it's anything like yogurt, I should love it.
I think with my husband, it is like Patt says. He just wants to ignore it. In Florida he went with me on every appointment. The doctor told him "it's not in her head. She is sick. She is the most stoic person I have ever met." I guess he just has forgotten about that.
When I tell him I need him to be there he says "what am I supposed to do." He always gets defensive and it ends up being a fight. Not sure it's worth the effort. Most of the time he is more focused on him it seems.
I actually used to use flax oil.
I need to go back to both sites you two mentioned. I read them both but can't for the life of me remember what I read. Guess I need to take notes. lol
I think with my husband, it is like Patt says. He just wants to ignore it. In Florida he went with me on every appointment. The doctor told him "it's not in her head. She is sick. She is the most stoic person I have ever met." I guess he just has forgotten about that.
When I tell him I need him to be there he says "what am I supposed to do." He always gets defensive and it ends up being a fight. Not sure it's worth the effort. Most of the time he is more focused on him it seems.
See that's a huge clue there! In Florida he had something he could do he went to your appointments. "Just be there" is vague, nebulus and downright scary to a lot of guys because they don't know how. They feel helpless because they want to fix things and they can't, they want to do something and they can't. So give him an action. He is probably really frustrated because he loves you and he sees you are in pain and he wants to make it better. You are frustrated because you are in pain and run down and it is making you hopeless. Sounds like you both need a direction and an active way to fight this.
Find a way to work together on this and I would highly recommend finding a support group, even one online that you can vent to so your husband isn't your only source.
Okay, I'm losing my mind. Lori, didn't you post a link about kefir? I know I was reading a site about it. I thought it was from a link you posted but I can't find it now.
And Patt, I thought you had posted the link on flax, but it was Judy. I kept going back and forth looking for your posts so I could find it and I kept passing it because I was looking for the wrong name. lol
I guess it irritates me too because it seems like my husband couldn't care less. If it's very obvious that I am hurting he will rub my shoulders but that's about as far as it goes. .
LOL!
If I wake my husband up and say "I am sick, will you get me xyz" he will do it, no problem.
If, however, I am having a severe allergic reaction and I am having trouble breathing, I will wake him up and say "I am having trouble breathing and I just took benadryl. Will you stay up with me in case I need you? he will not. He will say "I am going to go to sleep. Call me if you need me."
And, yes, he has taken me in to the ER a couple of times so he does know this can be serious. He just functions MUCH better if there is something he can do RIGHT then!!!!!!
Oh Kathleen. I am so sorry for this experience you are having. It sounds exasperating. Don't give up on your dreams.
Sometimes when conventional medicine cannot find an answer, we have to find it on our own. It sounds like you are already doing some great things to help yourself. Awesome! I am sorry your hubby is having a hard time "showing up" for you right now. He may be feeling helpless, too.
I just wanted to mention that, since you have inflammation, if you go to www.nutritiondata.com, you can type in the foods you regularly eat (top right) to view their nutritional profile. Stay with me here, please, because this isn't just the nutrition info we see on package labels.
Here is where I want to go with this: Each food carries it's own Inflammation Factor, which is in the second smallest box to the right of the nutrition data when you search a food. Take a close look at the info in that box. The IF indicates the potential of a food to cause an inflammatory response in the body. For example, I could type Garlic, raw into the search box. I see that the IF for garlic is on the + side of the scale. That means it is anti-inflammatory. Raw garlic is, in fact, highly anti-inflammatory. Lets do another, say Cereals, ready to eat, corn flakes. We see that they are moderately inflammatory.
You have been given lots of great info from others (and caring support!), and I don't mean to overwhelm you here, but I thought it might be something worth looking in to.
Oh Kathleen. I am so sorry for this experience you are having. It sounds exasperating. Don't give up on your dreams.
Sometimes when conventional medicine cannot find an answer, we have to find it on our own. It sounds like you are already doing some great things to help yourself. Awesome! I am sorry your hubby is having a hard time "showing up" for you right now. He may be feeling helpless, too.
I just wanted to mention that, since you have inflammation, if you go to www.nutritiondata.com, you can type in the foods you regularly eat (top right) to view their nutritional profile. Stay with me here, please, because this isn't just the nutrition info we see on package labels.
Here is where I want to go with this: Each food carries it's own Inflammation Factor, which is in the second smallest box to the right of the nutrition data when you search a food. Take a close look at the info in that box. The IF indicates the potential of a food to cause an inflammatory response in the body. For example, I could type Garlic, raw into the search box. I see that the IF for garlic is on the + side of the scale. That means it is anti-inflammatory. Raw garlic is, in fact, highly anti-inflammatory. Lets do another, say Cereals, ready to eat, corn flakes. We see that they are moderately inflammatory.
You have been given lots of great info from others (and caring support!), and I don't mean to overwhelm you here, but I thought it might be something worth looking in to.
THIS is fascinating! I think I will play around here for a bit. I think I could learn a few things.
Terri, he might respond if I gave him very specific instructions, but then I feel like I'm treating him like a two-year-old. He may do it but then I'd worry that he resents being talked to like he can't think for himself. Does that make sense?
Maybe I'm just over thinking it. But if he doesn't feel well, I'll ask "do you want me to do ___?" and he can tell me if he wants me to or not. That way he doesn't think I think he is incapable but I can help if he wants me to. It just seems logical to me. I guess I expect him to do the same.
MoonRiver, my doc in FL said I had a lazy thyroid so you may be on to something there.
As Patt wrote, men think they need to fix you if you have a problem. Instead of saying you want his support or to "be there" for you, you have to specifically say what it is. Driving you to the doctor's, bringing you a cup of tea, etc. When he does the smallest little thing, tell him "thank you, that makes me feel better". You don't need to be more specific in giving instructions if this bothers him, just make a point of appreciating what he does. It's hard for him to see you like this and not be able to help. He fluffs your pillow, he feels like he's able to DO something. Mars and Venus.
As for the thyroid, you can get a liquid iodine supplement at a health food store. Take four drops a day in a liquid and see if you feel better. Yes, you can self medicate on this. If, after a few weeks (sometimes a couple of days), you feel better, then you can be sure that you need the iodine. If you go to a doctor and have him give you medication, the medication will actually destroy your thyroid so that you will be on artificial hormones the rest of your life.
Kathleen - You said, "It bothers me that my body hates me." This is so sad. I can feel so much heaviness in that statement. I bet it's really an understatement. You have been going through this so long, and it has you completely emotionally drained. On top of that, your husband isn't being supportive when you need him to be. It must feel extremely isolating .....and foster a deep sense of loneliness. Could there be a pain management support group of some sort near you? These emotions you are feeling, though are what anyone in your shoes would experience, can actually make you feel even worse. If I was a neighbor, I would gladly come over just to be your sounding board! This forum is a good sounding board for you, as well.
I wanted to address your statement, too.
Is it possible that your body does not hate you...that there is something else going on?
Is it possible that all this pain is actually your body trying it's best to communicate something to you? I don't know, I'm just thinking about when I was in college and had to take an Into to Psychology class. In that class, we learned a lot about how the brain and nervous system works. We learned that pain itself is simply the way nervous system tells the brain that something isn't right, so to speak.
Here is what comes to mind. I used to work in a nursing home. We had strict orders to monitor our diabetic client's feet. We had to watch out for any sign of damage on their feet because they frequently cannot feel pain there. In short, they do not feel pain in their feet which allows a simple cut to get infected...and left untreated...all because they did not get the pain message that would have alerted them. Many diabetics have lost a leg because of this scenario.
So, maybe pain is actually your body trying it's best to preserve itself, after all. And just maybe, though it does not feel like it, just maybe pain is not the enemy it appears to be. Maybe it is just the messenger. Maybe pain is a message that your attention is needed somewhere. In your case, it's not so easy to figure out why this message continues to be sent out.
Have you ever meditated? I do believe our bodies and minds are connected. I know this may seem "really out there" but it may be helpful to meditate and ask your body to talk to you...to ask it what it needs..or what it wants you to know. I had an awesome spiritual (not necessarily religious) morning and evening meditation CD by Caroline Myss. It can relax me right to sleep, unfortunately!
I think it is very hard for anyone who doesn't have a chronic illness to really comprehend how wearing it is and how painful. I would make a nice dinner on a quiet night when you can talk and try to explain it to him. Let him know that you really need his help to work towards getting better. Men tend to ignore things that they think they can't fix because they are wired to fix things. If they can't get a handle on something they can actually do they feel helpless and so they shy away from it. Give him a way to help you. 
It sounds exasperating. Don't give up on your dreams. 
