Muscle And Joint Pain

[Budew]

I have to say thanks to everyone. I am so impressed with the suggestions I have gotten here. Since I joined the board you have helped me with nausea, sweats, migranes, congestion, cough, and skin problems.

I mean it when I say Everyday in Everyway things are getting better.

I have one issue left, and would appreciate suggestions.

I have muscle and joint pain. All the time. My doctor has me on hydrocodone. To function I need 30-50 mg a day. I do yoga and walk daily now. I am going to the chiropracter about once a week. I even put in a whirlpool tub. I use hot and cold packs. These things give me some relief. When the pain begins I try one or more of these things, hoping that I can get relief without narcotics. No matter what I do the pain eventually gets to me. If I let it go too long, I need more hydrocodone to settle it down. If I don't give into the drugs I end up writhing in pain, and finally in tears.

I would like to figure out what is causing it. I really don't have a clue. Any ideas?

It usually starts in my back then either moves down my hips and legs, or up to my neck and shoulders. Sometimes both. Occassionally my hands hurt ( I can't grip things) or my feet suddenly feel like I have been standing all day (but I haven't). Really has me in a quandry.

[mandyann]

I also have alot of muscle and joint pain. I always thought that they were related to my migraines but now I am beginning to realize that food sensitivites are involved. My pain used to start in my low back and would either settle in my right hip or go up my back to the base of my head. It would always be worse in those areas if I had a migraine. I am too on hydrocodone as needed and thankfully, I have a very patient and supportive doctor. I don't know if I can offer any advice as I haven't figured out why I hurt in so many places (even the bottom of my feet!) but I can relate to your frustration. My doctor mentioned inflammation and it's connection with Celiac's the last time we met, which made me feel a little better. I've been gluten free now for 6 weeks and am still waiting for my symptoms to subside. Good Luck, hope this helps!

[sherrid]

I haven't been officially dx yet I think I am in denial I don't want to find out I have this but yet am sick of living in the bathroom. I go in on Tuesday to have my blood drawn. This board has helped me see that people can cope with this and gave me the final push to go in.

[Ursa Major]

I used to have debilitating, unrelenting muscle, back, head and joint pain, day and night. It was so bad at times that I, too, would be writhing in pain, crying, and unable to sleep. For five years I was on codeine day and night, just to be able to barely function. Now I very rarely need any painkillers at all.

The difference? Being lectin free and salicylate lite (and gluten is a lectin, by the way). The lectins (especially all grains including rice, the gluten containing ones being the worst, eggs, dairy, legumes and nightshades) will cause the awful joint and back pain, as well as buckling of my knees and ankles, while the salicylates will cause the awful muscle and skin pains. This is apart from the gastrointestinal symptoms the lectins cause, of course.

The other day I gave in to a craving and ate an orange, and was unable to sleep that night without painkillers, as my right arm was aching terribly. That's all it takes, ONE orange, to make me miserable again!

If you want to know more, follow the links on lectins and salicylates in my signature. You may need to try an elimination diet.

[Budew]

Thanks for letting me know I am not alone. I use elimination to determine most everything.

It is reassuring to hear that salicylate elimination helped you guys. I used the link about a month ago to reduce them in my diet. I was wondering if it was really necessary, but I have felt so much better without them I had decided to continue that anyway. Your words help validate my choice.

Lectins, I will check out the site and give it a try. I was out of suggestions yesterday and today feel I have direction.

Thank you, thank you, thank you.

This is what I have done so far. Just incase you see something else that might help.

I have tested positive for celiac and thyroid disease. Everything else I have discovered through elimination.

I have strong reactions and feel sure that Iodine, eggs, nightshades (especially tomato, pepper, banana, white potato) all are very problematic.

I can tolerate small amounts of dairy. One serving of hard cheese or ice cream daily seem okay.

Milk is out but cream in my coffee is not a problem.

Acidic foods, vinegar, soda, wine, and cucumber are very iffy.

I stay away from high salicylate foods.

I have eliminated soy.

I have cut down on corn products, but I am not meticulous, but I feel better without it.

I have been vegetarian for 30 years by choice, but now react to exposure.

I have not tried oats because I haven't seen clear data saying it is okay.

I have trouble ingesting fats, so I stick to margerine, olive oil, and sesame oil.

Your are the first folks who have admitted to using narcotics. I needed to hear that, I felt like I was weak for needing it. My doctor is supportive but always mentions that I need to learn to get along without it. He makes sure that I know that people do not approve of the perscription, and that I should expect to be treated as a drug addict at the pharmacy.

I also agree that the folks on this site give me the support I need to go the extra mile. This week I am replacing my cookware, cutting boards, utensils, and buying a second toaster.

I would also like to mention that changing my make up has been a miracle. I did it last Friday and the changes in my healing and my skin are so exciting I can hardly hold back the joy. I had checked all of the lotions, soaps and shampoo. Then a couple weeks ago I was trying to figure out why the remaining sores were happening. Suddenly it hit me. Make up was causing the problems on my face, hands and forearms.

Already my hands and arms have healed and my face improves everyday.

Please let me know if you find any other answers to the pain issue.

I can so Identify with the story about the orange. I as testing white potato. Hoping a little would be okay. Wrong I found out that a single slice, or even a couple chips brings a reaction. Same thing with corn. Jonesing for a new taste I made cornbread one day. Shortly afterwards I was greeted with a headache and illness that lasted 3 days. Sure made me see that corn was clearly an issue.

[mandyann]

I was just reading the links that Ursula mentioned and it really does make sense to do a complete elimination diet if you are still having symptoms with a gluten free diet. (which is my case). I do know that when I followed the Paleo diet last spring all of my symptoms disappeared and I had no need for any medication. It was whenl I went back on all the foods, for the Celiac blood panel, that my symptoms came back. For me, especially when my symptoms are severe, I couldn't imagine not having relief with medication. I have a young child to care for and if I am in pain, he suffers as well. Going into the holiday season makes an elimination diet even less appealing but this year I am up for the challenge. Good Luck.

[Budew]

I am so excited. I just cleaned the cupboards, no more lectin.

Funny thing that most of the things I need to get rid of are things I added because if eliminations. Not really things I wanted to eat, but thought I should learn to like. Sure makes me think I should trust my instincts.

Elimination diet sounds bad, but the results are so clear, it is worth the inconvience. I have been doing it for 2 years, and I am having great results.

[loraleena]

There are other links on this site about how thyroid and adrenal fatigue can cause the pain. Are you taking Synthroid? If so, you should look into taking Armour. Get your adrenals tested.

[hineini]

Hi there,

I just want you to know you're not alone.

Food intolerances are not always (or even usually) the culprit for muscle and joint pain. I know there are people here who found dietary changes decreased or eliminated their pain and that's just great and I respect that. And I really do NOT want to get into debates about that stuff. But there's also a lot of misinformation I've found on this board about conditions such as fibromyalgia. Food intolerances do not help everyone and the latest fibromyalgia research shows a genetic component as well as a hormonal component (relating to dopamine) that causes neurological disruption, which is unlikely to have anything to do with food. Though I personally believe that food intolerances may trigger its onset in someone with a genetic predisposition, there is no research into that. Sounds to me (I'm not a doctor) like you may have symptoms of fibromyalgia. Severe, unrelenting pain for a long period of time that is not otherwise explained should definitely be checked out by a doctor. I would recommend seeing a rheumatologist. If in fact you have it, you can try dietary changes but if those don't work what is usually recommended is treating the underlying sleep disorders, any hormone imbalances, gentle exercise, hot baths, lots of rest and... yes, pain medications (if necessary).

I have tried everything under the sun for my fibromyalgia (which is often severe to the point of not being able to work) and what has helped me regain my life the most is regular gentle exercise, acupuncture, stretching, and pain medications - Yes, narcotic and/or opioid pain medications.

Anyway please do be sure to get other disorders ruled out before you decide to just eliminate entire groups of food. Just in case it's something besides a food intolerance.

I hope for your sake that food eliminations can heal your pain, because I know how much I wanted that to happen to me - Living with pain really sucks.

[daffadilly]

If you are living with pain please give up dairy - who really needs it anyway????

also, other foods that you might not be able to tolerate. I have also been checking into the lectin and think everyone should check it out.

I have been "allergic" for many years to a lot of the lectin foods, including white potatoes which gives me major pains in the heart area - I feel like I am going to have a heart attack!!

I seem to be able to tolerate pinto beans - I do soak them overnight, but i canno tolerate black beans.

I always say that "food is the most powerful medicine we have, we just do not know how to use it".

[georgie]

There are other links on this site about how thyroid and adrenal fatigue can cause the pain. Are you taking Synthroid? If so, you should look into taking Armour. Get your adrenals tested.

I can second this. Please check your Thyroid with all the tests and get your results. Fibromyalgia can be a symptom of low Thyroid.And if already dx and on Synthroid - consider switching to Armour.

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[jnifred]

ok here is my 2cents. I was diagnosed with clinical rhuamatoid arthiritis at 25, which means that all my tests came back normal, but my body wasn't and so THANKFULLY my doc recognized my symptoms and treated me. I was on various meds, trial and error. Enbrel for 5 years, helped immensely. THe joint pain, fatigue etc....so much better, a lot like what you are describing. I did not do any elimination diets back then, jsut within the last year figured out I had a gluten intolernace. Getting rid of gluten has pretty much cleared up my RA. I still take a muscle relaxer at night. as long as i get a good night sleep and eat right, drink plenty of water and exercise, I seem to be doing jsut fine. I am only on about 5 mg of prednisone a day now, which is incredible for me. Used to be nothing shy of 30+ mg would even think about helping (before Enbrel) . THe RA is basically in remission. I think you are on the right path. Everyone is different and you just have to keep trying until you find what works. You are by no means alone though.

[Ursa Major]

Hineini, I believe that there is always a specific cause (or sometimes, more than one cause) for fibromyalgia. It is a syndrome, meaning that there are many symptoms. These symptoms have a cause, that need to be figured out and eliminated. It could be gluten intolerance. It could be only salicylates, or only lectins. It could be hypothyroid. Or it could be a combination of all of the above, as is the case with me, or maybe something else altogether.

My pains were caused by food, but it seems that the fatigue is caused by low thyroid function and adrenal fatigue.

What caused what? Who knows. Is it possible, or even probable that all that has to do with my specific genes? Yes, very likely. My mother had most of the same problems as me. So does my sister, and some of my brothers.

Fibromyalgia should never just be diagnosed as such, and just be treated with painkillers, without at least looking into what might be causing it (while trying to make the pain bearable in the meantime). My doctors just decided that now they had found the cause of my pain (the fibro), and were treating the pain. But what they were doing was treating my symptoms, and they refused to look any further into the causes. I had to figure those out for myself.

Fibromyalgia is a diagnosis like IBS. It simply means that the doctor has no clue what is wrong with you, and they're too lazy to find out. Yes, I also saw a rheumatologist, who prescribed the codeine for me, as well as muscle relaxants. And told me to just keep going to my GP to get new prescriptions, to manage my pain. He told me that was it, and not to come back to him, as there was nothing further he could do for me.

I was one of those people who got much, much worse with any amount of exercise. Some people with fibro are unable to exercise, it makes the fibro flare up and causes incredible pain. Others are helped an awful lot by exercise. I think it depends on what the cause of the pain is.

When you say it is genetic, you sound like there isn't anything you can really do to make it go away. And of course, in a way, you can't. Just as you can't make the celiac disease go away by eliminating gluten, as it is genetic. But you sure can keep well and be healthy by being on the diet, which will eliminate the symptoms, and heal the damage done by the food you are intolerant to. And as long as you stay away from the offending foods, you will be well. And you will get sick again if you decide to reintroduce the foods that make you ill.

I've heard that some people's fibro is caused by chemical sensitivities. Stress can make it worse. Too much/too little exercise can make it flare up. Swimming in too cold water is often bad. Because fibromyalgia is really not just one illness, it can be caused by many, many different things. But it is often possible to figure out what these are, if you keep looking and never give up (as I have done).

[Ursa Major]

I have been thinking more on this subject of genetics.

Hineini, in the end, EVERYTHING your body does could have a genetic cause. Sometimes allergies and intolerances are acquired, by eating that food too much, for instance. Still, you probably had a genetic predisposition to develop that intolerance.

Sometimes you're born with an intolerance. I have twin grandchildren, a boy and a girl. Strangely, neither one has been able to tolerate the nightshade family right from birth! So, they were born with it. My daughter had to give up eating potatoes, tomatoes, peppers and eggplant, because otherwise those kids would get terribly sore bums with bowel movements while being breastfed (to the point of the skin peeling right off). How did they get to be intolerant to the nightshade family? It must have been a gene coming from me, through my daughter. My daughter has no problems with those foods, but her kids do.

Most of my grandchildren can't tolerate dairy. Why? Neither one of their parents has a problem with it! Poor things, here go my genes again.

I have passed on some good things, too, of course. Little Zoey has my red hair (and her dad's), yay! All my kids are very smart, and so are my grandchildren (who also have very smart dads). One of my grandchildren has bright blue eyes, and one has green eyes, even though both parents have hazel eyes. How come? Both grandmothers have blue eyes, and there are green eyes coming from my husband's family, too.

Really, everything comes down to genetics in the end. Some people never get sick, while others are more susceptible to illnesses. Some people are more athletic, while others are more musical. And usually you can look at the parents and grandparents and figure out where it comes from.

I wished I wouldn't have passed on so many bad things. But how could it have been prevented, short of not having kids? Especially with not knowing about any of those bad things at the time I had those children. Would I have had them anyway? Sure, you never know, you may not pass any of the bad things on! None of my kids has Tourette Syndrome or Asperger Syndrome (even though some have some AS traits, which isn't a bad thing, anyway).

If I would have thought I'd pass on genes for a deadly disease that would kill my kids while still very young and make them die a horrible death, I certainly would have adopted kids instead. But if you pass on intolerances, I don't see that as being a big deal, as those can be managed, and the kids can potentially live a long, healthy life anyway.

Anyway, I think I got carried away with putting my thoughts into print, which is something I am wont to do.

[barbara3675]

Totally in agreement with Ursala.....on two points. First, her theory on fibromyalgia. I was diagnosed first with fibromyalgia and went on magnesium with malic acid and Mobic (which I still take) and then I was diagnosed through Enterolab with a gluten intolerance. Since eating gluten-free, the fibromyalgia is much better with only flare-ups when I have been under a lot of stress through work/lots of extra physical movement. I was in a flare just this last week and it is just subsiding today. I am grateful that I have the fibro under this much control. The second point I agree with is genetics. My granddaughter has full-blown celiac disease, diagnosed when she was one. She obviously got it from me as Enterolab diagnosed me to carry a gene---- I obviously have had a latent case of it for a long time. My mother has had digestive problems for so many years and who knows......if we would have had her eating gluten-free sooner, maybe she could have avoided some of the problems she is having now at 88. She does try to eat gluten-free, but it is pretty hard at that age to do it exclusively as she had divirticulosis and some other things so she can't eat much. She does try though. I think her insides were ruined from gluten. When I was younger, I used to have episodes when I would get so sick after eating major gluten food that I would actually have a spell where I would be so sick I would have to go to bed and sleep it off until it all passed. That happened to me so many times and we never knew where that came from. It was always different from the migraine headaches that I also was enduring at the time. My friend, who has been with me FOREVER, kind of put it together and called it to my attention after I went gluten-free. It all made perfect sense and it has never happened again since going gluten-free.

Barbara

[valzues]

Hi there,

I just want you to know you're not alone.

Food intolerances are not always (or even usually) the culprit for muscle and joint pain. I know there are people here who found dietary changes decreased or eliminated their pain and that's just great and I respect that. And I really do NOT want to get into debates about that stuff. But there's also a lot of misinformation I've found on this board about conditions such as fibromyalgia. Food intolerances do not help everyone and the latest fibromyalgia research shows a genetic component as well as a hormonal component (relating to dopamine) that causes neurological disruption, which is unlikely to have anything to do with food. Though I personally believe that food intolerances may trigger its onset in someone with a genetic predisposition, there is no research into that. Sounds to me (I'm not a doctor) like you may have symptoms of fibromyalgia. Severe, unrelenting pain for a long period of time that is not otherwise explained should definitely be checked out by a doctor. I would recommend seeing a rheumatologist. If in fact you have it, you can try dietary changes but if those don't work what is usually recommended is treating the underlying sleep disorders, any hormone imbalances, gentle exercise, hot baths, lots of rest and... yes, pain medications (if necessary).

I have tried everything under the sun for my fibromyalgia (which is often severe to the point of not being able to work) and what has helped me regain my life the most is regular gentle exercise, acupuncture, stretching, and pain medications - Yes, narcotic and/or opioid pain medications.

Anyway please do be sure to get other disorders ruled out before you decide to just eliminate entire groups of food. Just in case it's something besides a food intolerance.

I hope for your sake that food eliminations can heal your pain, because I know how much I wanted that to happen to me - Living with pain really sucks.

Hi, I was told years ago I had fibromyalgia and IBS. I did a bodybuilding competion and afterwards started coming down with so many health issues. I was 29 then, I blew it all off. I also had to have 3 major spine surgries-not because of the bodybuilding. Well, here I am now 42 and just found out over a month ago I have Celiac Sprue. I had been throwing up, all the other nice things with this diease since April of 2006. I did find a great doctor when I finally decided to go to onw. I could not handle the pain in my stomache and sickness anymore. I too am having very painful joints, lower back pain that leads in to my legs. I hurt all over. The strange thing is I was doing OK pain wise with fibromyalgia symptons until I started on this diet. It is so nice to read all this information. I am getting in to another doctor soon and hopefully find some relief. Thanks for all of your help. Valerie

[Budew]

Vey helpful information. I will complete the elimination food diet over the next year.

But I will look into the fibro and see a rhematologist.

Weird thing about kids. My mom has been celiac all my life. My brother a brittle diabetic. At age 13 I decided I would not have children because of the hereditary factors. I became a teacher to fulfill a need to be with with kids. Now I am so glad I stuck to that commitment.

I still have a question about pain relief. Do optiates work better than narcaotics?

[Ursa Major]

I still have a question about pain relief. Do optiates work better than narcaotics?

There is no one answer to that. What works for one person might not work for another. Lots of people like using morphine, and can't tolerate codeine. I am intolerant to morphine, and take codeine without any side effects at all (other than being dopey when taking more than 50 mg). For others something else will work best.

You and your doctor will need to experiment. It might take a while before you find what works for you (by then, you may not need anything, if you try the elimination diet, and figure out your intolerances ).

[Budew]

A bit off topic but worth mentioning.

I have been on the elimination diet for a long time. I finally think I have cut out all reactive foods. So I can really see correlations beteen the foods I eat and the reactions to them.

So funny thing happened last night....

Hershey's kisses are supposed to be okay. For dessert I had 5 kisses. Shortly afterwards I thought I feel high. I had not consumed any pain meds or alcohol. Still hungry I had 5 more kisses. Then holy cow, it as like I was drunk, relaxed, euphoric at first then room spins, just like if a person is drunk. I guess I had better not snack on chocolate wharn I drive : )

[Mtndog]

Budew- Chocolate It does, supposedly if you eat enough, have the same affect on the brain as marijuana. No chocolate and driving for you!

Personally, I am conflicted about the whole fibromyalgia diagnosis, but more about that in a minute. First, I wanted you to know you are not alone. I have arthritis in my neck and lower back. I have two discs in my lower back that ruptured completely and disappeared in my early twenties. In my neck I have a fusion of two veterbraes and a cervical rib (thanks Adam- that wasn't the rib I needed! ). Basically a cervical rib is a vertebrae that grew a little too long. So, I have a fair amount of skeletal issues.

I have had muscle and joint pain for over 18 years (I'm 38!). I see a physiatrist. He told me that Fibromyalgia is a diagnosis of exclusion meaning that they've ruled out all other causes. i was recently tested for rheumatoid arthritis, lupus, MS, Lyme, and thyroid (all negative) to rule them out as the cause of the pain and stiffness I am experiencing. All my blood work came back fine. He wants me to see a rheumatologist so I am going to do that.

I've eliminated legumes (soy, paenuts, most beans) as I know they make my pain worse. Also, he told me that gluten and having celiac could have caused joint and muscle pain that make take awhile to go away.

I say I'm conflicted about the diagnosis of Fibromyalgia because I do think it exists. I think it is a real syndrome but I think it is set off by different things in different people (whether it be a physical or emotional trigger).

One question for you though about the narcotics. I don't do well with them personally but I'm surprised that he didn't give you an anti-inflammatory (unless you already take one and I didn't see it) or a non-narcotic muscle relaxer. Both of my arthritis meds are non-narcotic....I take Skelaxin for muscle and nabumetone for inflammation when need be.

But, I'm still trying to figure out the cause too.

[dragonmom]

ok, this is way out there perhaps but have any of you heard of Lame Advertisement juice? My sister started me on it and it does make my joints feel better. Perhaps I'm just thinking it does....but it does seem to help. It is mostly different fruit juices and is expensive but I like it. Well, since I do not sell this Lame Advertisement I just use it to feel better. So don't buy it and don't try it - go with drugs instead.... they're always better for you anyway. I 'm sorry I mentioned the "devil juice at all.

[julie5914]

I'm being lazy and not reading your other replies, but I hope by now someone else has mentioned this. It sounds like a rheumatic problem, such as connective tissue disease. Have you had an ANA test?

On another note, I read yesterday that fish oil supplements are suppsoed to help with inflammation. I am going to start trying them soon.

[small fry]

I have been dealing with muscle and joint pain as well. My is in my lower back and both hips. Sometimes one side is worse than the other. It is most painful in the morning after sleeping and lying on my side. I was dx'd with a vitamin D deficiency due to celiac. The dr rx'd high level of Vitamin D for 2 months. I felt GREAT after about 1.5 months. However about 1 month after being off the vitamin D the pain was back. They checked my vitamin D level and it had dropped 50 points in one month. They did another EGD and after 9 months gluten free my small intestines had not changed much. My doctor at Mayo Clinic is convinced the Vitamin D deficiency is causing the muscle and joint pain. I am on an over the counter vit D supplement now. Anyone else taking vitamin D supplements?