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I can't stand the pain anymore - Page 2

post #21 of 58
Quote:
Originally Posted by FondestBianca View Post
I had what appeared (to me, an allergist, and an ER doc) as an anaphylactic reaction back in Dec. I ended up having about 3 more reactions in the 2 or 3 months following. That led me to an allergist who did skin testing for a zillion things. Environmental stuff, foods, animals, etc. NOTHING reacted. I also have what appears to be pretty bad seasonal allergies but again, reacted to nothing. I did a blood test for celiacs and dairy allergy and both were negative. I know I'm sensative to soy. I've had problems with it in the past and do my best to avoid it. I did not react to soy on the skin test however. I also noticed a few years ago that artificial sweeteners increase my pain levels in my skin tissue (if not cause it). I kicked it out completely but, that makes getting rid of actual sugar even more difficult unfortunately.
We xposted so I didn't see this before.

Skin testing for IgE allergies doesn't reveal food intolerances. The blood test for celiac for example doesn't reveal non celiac gluten intolerance which has been shown to cause FM and RA symptoms. The ALCAT or IgG testing might be more helpful. Or www.enterolab.com. Or do elimination-provocation testing yourself.

You can also have anaphylactic type responses to food chemicals. Food chemical intolerance does not involve the immune system at all but how the chemicals are broken down or detoxed by the body (or not). For example, salicylates for me were a big trigger of my IC before gut healing and intensive supplements.
post #22 of 58
Thread Starter 
Quote:
Originally Posted by karika View Post
I agree that you should move into an all natural, organic, chemical free, GFCFSF diet. IMO fibro and other chronic pain is caused by toxins. Sometimes the toxins are from vaccines, environment, packaged foods and foods you are intolerant to. I do not understand the resistance to cannabis. It is a plant. Think of it like any other supplement. It is not a man made creation like alcohol. It is an herb. It is very successful in treating fibro, chronic pain and migraines. You do not have to smoke it. You can use cannabis butter to make foods like brownies and cookies. You can also use a smokeless thing called a vaporizer that has no smoke output at all. There is no smoke associated with it, no second hand smoke. You will be able to care for your home and children without a problem. If you are nervous, the first time, have another caregiver there. If you use natural supplements, cannabis is the next thing to try, along with changing your diet to exclude msg, food colorings, preservatives, anything with HFCS or any other form of GMO product, as well as dairy, gluten and soy. Corn may be a trigger also. Look into healing your fibro yourself through food. It works.
I know it must sound stupid to someone who doesn't have an issue with it. I know it's uniquely different that other substances used as drugs but, I just won't do it. It's one of those things I promised myself I'd never touch (along with alcohol and tabacco) and I'd never feel ok with myself if I did it. I know most people don't understand that but, it's part of my core beliefs. If others are ok with it, thats their deal and their business. It's just not for me.

I've been working on cleaning up my diet for a couple years now. Just when I think I've fixed it, I find another item I should be giving up and have to go back through everything again. It's a long, complicated, process as I'm sure anyone who has done it will know.

Also, OT but I think we must live close to one another. Living in eastern WA usually means you're somewhere near Spokane.
post #23 of 58
Another post

The nighttime "waking in a panic" could be adrenaline surge from low blood sugar. If you go hypoglycemic, your adrenals kick your liver to produce glucose to bring it back up (and keep your brain from going into coma). The adrenaline that gets released causes anxiety and insomnia. I've been reading a lot about this lately. Hypoglycemia is caused by a high carb diet ... and a high fat, high protein, no grains/sugar primal eating would end it.

I'd be very interested to know what your fasting blood glucose level was and would wager it was low.
post #24 of 58
Thread Starter 
Quote:
Originally Posted by sbgrace View Post
I would definitely pursue the lyme aggressively if you think that is the issue.

How much vitamin D3 and what were your levels before, after supplementing (how much/how long)? I assume you've looked at thyroid? Is your calcium level normal?

I think I've mentioned this before but I definitely think you need to look at metabolics. Two ways to do that (both are ideal if you can): run a metametrix comprehensive urine profile (I'd do this if I could only do one thing as it will look at lots of areas that might be issues), test your coq10 and carnitine levels.
My levels when I first asked to have them checked when around 30. I supped about 1800IU per day (my doc only suggested 400IU *rolls eyes*). I took between 1600-2200 a day for several months. In addition to that I had been tanning as well. I know, I know, bad but, it was one thing that made me feel better for a few minutes. When I had my levels rechecked I'd dropped down to the teens. I'm now taking about 3000IU per day and do a higher dose about once a week. Thyroids have always tested within normal. Unfortunately I can't have much (if any) testing done right now. I lost me insurance and can't get or qualify for any now. Not private or state coverage. I'm on a program like a membership that allows me to go to one clinic and have whatever tests they can do in house, for a flat monthly fee but, even vit D is something they have to send out. It cost about $75. I can certainly check prices for coq10 and carnitine but, I imagine it will be too expensive.

I wish I'd had doctors that were on the ball back when I had great insurance and could have had any test in the world done for free.

The lyme is definatly an issue. My symptoms run far deeper than just joint pain. I've been through some scary things the last 5 years.
post #25 of 58
I have personally never enjoyed accupuncture, but it is supposed to be good for pain.

It might be worth a try. Unfortunately, it is expensive. Around $100 a treatment.

But if you ask, maybe they can show you some accupressure points to work with on your own that may bring relief.

V
post #26 of 58
Thread Starter 
Quote:
Originally Posted by JaneS View Post


I know exactly how you feel and it's beyond hell to live everyday like this. I had interstitial cystitis through TCC, pg and first several years of DS's life. I hope you can find some answers soon!

PB,
You mean everyone you've ever worked with with chronic pain has Lyme? That's very interesting.
My IC was REALLY bad in the past but hasn't bothered me much. It actually took a 2 or 3 year hiatus between dd and ds! It's the least of my discomfort right now. That IC can definatly stop you in yor tracks though. I remember not being able to even stand up straight or wear anything but pants with very loose waist bands. The being affraid to pee because it hurt so bad. My bladder was so damaged from it by the time I had dd that my cath bag during labor was silled with more blood than it was urine from the cath ripping my sensative urethra and bladder tissue up. Not fun! I hope you find some permenate relief from that!
post #27 of 58
Thread Starter 
Quote:
Originally Posted by JaneS View Post
We xposted so I didn't see this before.

Skin testing for IgE allergies doesn't reveal food intolerances. The blood test for celiac for example doesn't reveal non celiac gluten intolerance which has been shown to cause FM and RA symptoms. The ALCAT or IgG testing might be more helpful. Or www.enterolab.com. Or do elimination-provocation testing yourself.

You can also have anaphylactic type responses to food chemicals. Food chemical intolerance does not involve the immune system at all but how the chemicals are broken down or detoxed by the body (or not). For example, salicylates for me were a big trigger of my IC before gut healing and intensive supplements.
My reactions were from something that takes a bit of time to break down because I didn't start seeing symptoms until about 2 hours after eating something with the offensive ingredient in it. I think I actually narrowed it down to the food (packaged) that caused it. Unfortunately we did skin testing for everything on the ingredient list and came up with nothing. So it's probably one of the spices or chemicals they lump in with other things on the list or don't put on the list at all. Needless to say, I avoid that item with certainty.... which is too bad, because it was pretty darn tastey.

As for other diet stuff. I'd have to experiment with elimination (or reverse elimination) because I don't have medical insurance (and can't get any) and only have access to very basic testing at a clinic where I pay a monthly flat fee.
post #28 of 58
If you are low in D plus autoimmune or potential viral issues, you should be on 10,000 IU per day until your blood tests in the high normal. I had to do this for many months in a row to get my blood levels up. This is the average one would make in the (right amount, time of year) sun per day. That is probably why tanning made you feel better b/c you were getting more IU's per day. Levels do drop quickly.

www.vitamindcouncil.org

Or 'Naked at Noon' everyday in spring/summer at your latitude, until skin turns pink (before burning). Then at least 4000-5000 IU per day, or even more depending on how much you weigh, to keep it up through fall/winter.
post #29 of 58
My IC is totally gone unless I slack on supplements and eat a really spicy meal. Every once in a while my bladder twitches if I overdo a day of really high salicylate foods: a lot of tea, spices/pepper, tomato sauce and berries all at once for example.

I would put food chemicals on your list to test with the FAILSAFE diet, potential symptoms here:
http://www.plantpoisonsandrottenstuff.com/
post #30 of 58
Quote:
Originally Posted by JaneS View Post

PB,
You mean everyone you've ever worked with with chronic pain has Lyme? That's very interesting.
Sorry, I'm not sure if that was something I wrote or that it was something lost in interpretation. I cannot say that everyone with chronic pain has lyme, but everyone who has lyme feels better grain and sugar free. We have my husband in a very good place and any bit of sugar or grain will have him flair. If he goes off the remedies he's in misery-a 9 on a scale of 1-10 for pain. On the remedies he is great-at this point I'd say legitimately a 2 or a 3. However if he eats grains and sugar he'll flair to a 6 or 7.

It's fairly well understood by LLMD's at this point that borrelia lurves the gluten and the sugar. I have certainly seen that bear out in practice. I have had a few people that have been able to overcome the errors in diet with remedies so that they are feeling significantly better despite eating those things. Bums me out because I really believe they'd feel totally better if they changed that last thing! I'd never recommend that anyone with lyme eat either. That's why the primal type of diet works so very well. I also like that Mark recommends exercise which, while painful, is essential.

I also agree with the nighttime waking and adrenaline surge-something to check out for sure and something that the dietary changes can also help quite a bit with.
post #31 of 58
Have you tried 5-htp? It's an amino acid supplement - I've heard it can help with fibromyalgia symptoms...
post #32 of 58
Thread Starter 
Quote:
Originally Posted by JaneS View Post
Another post

The nighttime "waking in a panic" could be adrenaline surge from low blood sugar. If you go hypoglycemic, your adrenals kick your liver to produce glucose to bring it back up (and keep your brain from going into coma). The adrenaline that gets released causes anxiety and insomnia. I've been reading a lot about this lately. Hypoglycemia is caused by a high carb diet ... and a high fat, high protein, no grains/sugar primal eating would end it.

I'd be very interested to know what your fasting blood glucose level was and would wager it was low.
I am hypoglycemic, yes. It's been worse the last few months. It also got quite bad during both pregnancies. I wake in a panic often. Hyperventalating, heart racing, fight or flight instinct, disoriented, feeling of impending danger.... makes restful sleep pretty hard. It's also been suspected by docs that I have an epilepsy disorder and may be having partial seizures in my sleep (which would explain the hallucinations I suppose). I've had some seriously intense hallucinations in the past. The kind that makes sleep specialists say, "wow, even my worse narcolepsy patients don't describe stuff that vivid!". Heck, maybe I have narcolepsy too. I typically start dreaming VERY soon after falling into a light sleep.

As I've mentioned in this thread. Going no sugar would be a tough one for me. Sugar addict.
post #33 of 58
Thread Starter 
Quote:
Originally Posted by Panserbjørne View Post
Sorry, I'm not sure if that was something I wrote or that it was something lost in interpretation. I cannot say that everyone with chronic pain has lyme, but everyone who has lyme feels better grain and sugar free. We have my husband in a very good place and any bit of sugar or grain will have him flair. If he goes off the remedies he's in misery-a 9 on a scale of 1-10 for pain. On the remedies he is great-at this point I'd say legitimately a 2 or a 3. However if he eats grains and sugar he'll flair to a 6 or 7.

It's fairly well understood by LLMD's at this point that borrelia lurves the gluten and the sugar. I have certainly seen that bear out in practice. I have had a few people that have been able to overcome the errors in diet with remedies so that they are feeling significantly better despite eating those things. Bums me out because I really believe they'd feel totally better if they changed that last thing! I'd never recommend that anyone with lyme eat either. That's why the primal type of diet works so very well. I also like that Mark recommends exercise which, while painful, is essential.

I also agree with the nighttime waking and adrenaline surge-something to check out for sure and something that the dietary changes can also help quite a bit with.
Like I said, sugar would be tough. I've been a sugar addict all my life. Sweets on the brain 24/7! I've eliminated so many things from my diet already and currently trying to get back down in weight a bit. So doing even more with my diet seems like a huge stress. I have cut back a significant amount in the last 3 months however. Are natural sugar alternatives just as bad? I imagine so.

I've had my adrenals checked and everything was apparently a-ok. Though I know better than to just assume docs know what their doing all the time.

The night time issues get very stressful and effect my waking time as well. Sometimes it gets so bad I'm affraid to go to sleep because of what I may experience or see. My husband sleeps like a log. Falls asleep within 2 minutes of intention and stays asleep all night unless something external wakes him. So jealous. My two major points of appearence or significant increase in symptoms seemed to be following the birth of both kids. Thats when I got the most new symptoms and lngest lasting cycles of them. Though last winter brought the most intense joint pain and joint injury pain. Now the pain is more widespread and injury to joints, tendons, ligaments, and muscles is easier.

I've been exercising regularly for about 3 or 4 months now and aside from the first 2 weeks I've only seen an increase in pain, weakness, and injury. Even after working with a trainer to find better accomidating exercises it's been much the same. Very frustrating and scary to see these significant and unfortunate changes in my body despite efforts to heal.
post #34 of 58
The allergy testing you had (IgE) won't find the allergies you are describing. The IgE allergies are "immediate onset allergies" meaning you react right away and are the anaphylactic type. If your symptoms don't start for 2 hours after ingesting the offending ingredient they would be IgG allergies, or "delayed onset allergies." I tested OK on all my IgE allergy tests too. I got IgG testing done and on a scale of 0-5 I was a 5+ on milk, and a 3 on egg and sunflower. I've eliminated milk completely. I can't even tolerate minute amounts in seasonings and such. (I recently reacted badly to what I finally narrowed down to a steak seasoning that has "natural flavors") I got my IgG allergy testing done through my ND. He ordered the kit, had it sent to my house, and I sent my blood in for testing. I only got tested for 30 foods because it was all I could afford at the time. It was $130.
post #35 of 58
Quote:
Originally Posted by FondestBianca View Post
I had what appeared (to me, an allergist, and an ER doc) as an anaphylactic reaction back in Dec. I ended up having about 3 more reactions in the 2 or 3 months following. That led me to an allergist who did skin testing for a zillion things. Environmental stuff, foods, animals, etc. NOTHING reacted. I also have what appears to be pretty bad seasonal allergies but again, reacted to nothing. I did a blood test for celiacs and dairy allergy and both were negative. I know I'm sensative to soy. I've had problems with it in the past and do my best to avoid it. I did not react to soy on the skin test however. I also noticed a few years ago that artificial sweeteners increase my pain levels in my skin tissue (if not cause it). I kicked it out completely but, that makes getting rid of actual sugar even more difficult unfortunately.
The anaphylactic reaction is a clue that you are a very sensitive individual. I'm guessing they didn't test for what you are truly IgE allergic to.

Anyway, skin testing won't diagnose food sensitivities. It may not even work all that well for IgE "true allergies" either. You could have sensitivities to one or more foods you are eating every day...any food. My worst offenders in this regard are rice, apple, citrus, and grape. There are a number of others, but these are the ones that cause the joint inflammation problem - for me. I have no problem with dairy or wheat. There are a number of IgG tests that certain (typically alternative) HCP's will do, but every allergist I've ever heard of won't do these tests, they only test for IgE, or "true allergies".
The allergies subforum has lots of info on which IgG tests are more accurate than others.

Too bad you're not near Maryland, or I could "feel out" some foods for you. (Recently I've been able to tell which foods, just by feel, that someone is having a problem with.) Let me know if you ever come out this way.
post #36 of 58
exercise in the absence of appropriate treatment is not likely to bring relief, I will grant you that. I understand on the sugar, but unfortunately it really is an obstacle to cure. Think of it this way: sugar is feeding the borrelia thus exacerbating lyme. I don't think you'll find any information anywhere to refute that. So as bad as this is, as debilitating as it is, as disruptive as this is, isn't it worth it to go through the minor discomfort of changing your diet? IF it's not, it's not, and that's fine. But, you have stated that money is a significant issue and this is a free solution that at worst will help significantly with the blood sugar swings, and at best can bring significant relief from the pain. Grains are included because they do turn to sugar.

I know it can be hard to eliminate things-so I tell people not to. Instead of eliminating, discover a new way of eating. Find new, inspiring recipes that will facilitate healing. IF you follow a primal style of eating, grains and sugar aren't included. So you can sally forth on an entirely new path. The information is free (it's all online-there is a book and an accompanying recipe book but there's so much for free that you don't need it.) You need to buy food anyway-it's just a different kind of food. It's way cheaper than allergy testing, doesn't require a practitioner of any kind and is very common knowledge for any kind of healing. Sugar is not our friend. The sweets on the brain signify an imbalance. If you have very little in the way of resources that's an easy place to start.

I'd strongly consider it, but that's just me.
post #37 of 58
Quote:
Originally Posted by FondestBianca View Post
My reactions were from something that takes a bit of time to break down because I didn't start seeing symptoms until about 2 hours after eating something with the offensive ingredient in it. I think I actually narrowed it down to the food (packaged) that caused it. Unfortunately we did skin testing for everything on the ingredient list and came up with nothing. So it's probably one of the spices or chemicals they lump in with other things on the list or don't put on the list at all. Needless to say, I avoid that item with certainty.... which is too bad, because it was pretty darn tastey.

As for other diet stuff. I'd have to experiment with elimination (or reverse elimination) because I don't have medical insurance (and can't get any) and only have access to very basic testing at a clinic where I pay a monthly flat fee.
My IgG reactions take a few hours to start manifesting. Then I feel all the different reactions as the food goes all the way through. Fun, fun. A skin test won't test for this kind of food issue, only the IgE stuff, if even that.
post #38 of 58
I agree with the other posters that getting sugar out of your diet should be your #1 goal.

Regarding Vitamin D levels, I just came across an interesting blog that therorizes grain consumption interfers with Vit D production.
http://wholehealthsource.blogspot.co...result-of.html
post #39 of 58
Thread Starter 
Quote:
Originally Posted by californiajenn View Post
I agree with the other posters that getting sugar out of your diet should be your #1 goal.

Regarding Vitamin D levels, I just came across an interesting blog that therorizes grain consumption interfers with Vit D production.
http://wholehealthsource.blogspot.co...result-of.html
It seems to be a popular suggestion, yes. Thank you for the link.
post #40 of 58
Thread Starter 
Quote:
Originally Posted by KimPM View Post
My IgG reactions take a few hours to start manifesting. Then I feel all the different reactions as the food goes all the way through. Fun, fun. A skin test won't test for this kind of food issue, only the IgE stuff, if even that.
Quote:
Originally Posted by KimPM View Post
The anaphylactic reaction is a clue that you are a very sensitive individual. I'm guessing they didn't test for what you are truly IgE allergic to.

Anyway, skin testing won't diagnose food sensitivities. It may not even work all that well for IgE "true allergies" either. You could have sensitivities to one or more foods you are eating every day...any food. My worst offenders in this regard are rice, apple, citrus, and grape. There are a number of others, but these are the ones that cause the joint inflammation problem - for me. I have no problem with dairy or wheat. There are a number of IgG tests that certain (typically alternative) HCP's will do, but every allergist I've ever heard of won't do these tests, they only test for IgE, or "true allergies".
The allergies subforum has lots of info on which IgG tests are more accurate than others.

Too bad you're not near Maryland, or I could "feel out" some foods for you. (Recently I've been able to tell which foods, just by feel, that someone is having a problem with.) Let me know if you ever come out this way.
Quote:
Originally Posted by KMK_Mama View Post
The allergy testing you had (IgE) won't find the allergies you are describing. The IgE allergies are "immediate onset allergies" meaning you react right away and are the anaphylactic type. If your symptoms don't start for 2 hours after ingesting the offending ingredient they would be IgG allergies, or "delayed onset allergies." I tested OK on all my IgE allergy tests too. I got IgG testing done and on a scale of 0-5 I was a 5+ on milk, and a 3 on egg and sunflower. I've eliminated milk completely. I can't even tolerate minute amounts in seasonings and such. (I recently reacted badly to what I finally narrowed down to a steak seasoning that has "natural flavors") I got my IgG allergy testing done through my ND. He ordered the kit, had it sent to my house, and I sent my blood in for testing. I only got tested for 30 foods because it was all I could afford at the time. It was $130.
There are so many symptoms and so many things to wrap my head around (when my head isn't exactly on point and ready to absorb information). I could never get a straight, simple, answer out of anyone about the accuracy of the skin testing. Unfortunately, I didn't have insurance when I did the testing and don't have it now. Thank goodness, the allergist had pity on me and only charged me for the office visit. It was going to be a $500-$800 bill and I was only charged about $150 (consult fee).

I'd wondered what I've been eating lately that is new that may be causing the sudden flare in pain again. I started having soups for dinner every night about a month ago when I got more serious about cutting down on calories and increasing fiber. I've been too worn out to make my own so I'm just using canned soups and adding fresh and frozen veggies to them. Not sure what I'd be getting in the soups that I hadn't previously been getting in other prepackaged stuff.
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