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I can't stand the pain anymore

post #1 of 58
Thread Starter 
I've been scarce around MDC for awhile now. Below pretty much explains my absense.

I'm still BFing ds but we've weaning back to only one feeding per day (when he wakes up at night). My prodominant reason for weaning is so I have more medication options. I've NEVER been one to want to take meds but this has been 5 years of worsening health, supplements not doing the trick and the past 1.5 years of straight misery. I've been taking Ibprofen in times when I just can't tolerate the pain anymore but, it's not working anymore. I do the supplements, the magnesium baths, the glucosimine, calcium, vit D (LOTS of vit D), pre natals, the primrose, and it's taken a turn for the worse again despite all of that.

While DS is still nursing I understand there isn't much I can do but, soon he may stop needing his night time feeding. He hasn't so much as asked during the day for a couple weeks now.

I can't take this much longer. It hurts. It hurts like hell, every day. Every damn day. My knees, my back, my neck, my ankles, my hips, and that deep ache in the core of my leg bones... every... single.... day. My back spasms when I try to go to sleep at night. The migraines are back lately too (light, sound, and movement sensative). Sometime my jaw, my hands, or my feet are in pain.

With all of this medical stress and failing body and mind I've still managed to keep the house in order, take care of my kids and my animals, and keep a pretty darn decent mood. I hadn't cried for over a year even with all the bad news from doctors, worsening symptoms, frightening symptoms, and sometimes unbearable pain. But, this past Sunday, my husband was sleeping in after a long work week and I was upstairs tending the house while the kids played... and I just couldn't take it anymore. I asked the kids to be good, that I needed to go downstairs for a few minutes. They went about playing together in one of their rooms and I went downstairs, climbed into bed in the darkened bedroom with my husband, and cried. He did his best to comfort me as long as I needed. 10 minutes later, I wiped away the tears, picked myself up, and went back to my life.... in pain. Still in control.... but in pain.

What can I do? What can I take once ds is done that will help but won't cause more problems. The only thing besides OTC pain killers I've taken in the past was the codine I was given after surgery. I got sick nearly instantly after just one, threw up, then felt sick for the next 3 hours. Never took another one again. Dont' want a repeat nor do I want to take something that will do more harm than good or interfear with being a SAHM. I think I've just run out of options. I don't know where to go from here.

Any suggestions, advice, relating?
post #2 of 58
I have no idea if this is of interest to you, but do you have access to medical marijuana? My aunt has post-polio syndrome and it has helped with a lot of her pain without the side effects of some of the painkillers she has had to take in the past.
post #3 of 58
Um, forgive me if I've missed previous posts but what specifically are you suffering from? Is it unexplained chronic pain, were you in an accident, etc?

You've probably researched everything but just in case, I'll pass this along:

http://coolinginflammation.blogspot....ache-diet.html
post #4 of 58
I am in constant pain too...constant headache for over 4 years now. I have heard great things about the Paleo Diet and it's ability to reduce/eliminate pain. It has done wonders for my brother and my SIL and I am about to dive into it as well.
post #5 of 58
Thread Starter 
Quote:
Originally Posted by deditus View Post
I have no idea if this is of interest to you, but do you have access to medical marijuana? My aunt has post-polio syndrome and it has helped with a lot of her pain without the side effects of some of the painkillers she has had to take in the past.
I'm very opposed to it and wouldn't use it no matter how bad the pain. People can rationalize it how ever they like to try to convince me but, it's just one of those things I'm against, yk. Heck, I've never even had a single sip of alcohol because I've deemed it "bad". Besides that, getting high while taking care of my kids wouldn't exactly be the most responsible thing in the world.
post #6 of 58
Thread Starter 
Quote:
Originally Posted by californiajenn View Post
Um, forgive me if I've missed previous posts but what specifically are you suffering from? Is it unexplained chronic pain, were you in an accident, etc?

You've probably researched everything but just in case, I'll pass this along:

http://coolinginflammation.blogspot....ache-diet.html
so far chronic lyme seems to be the major culprit but, I'm still in the diagnostic process. I've also been diagnosed with fibro (though I think thats just the lyme), epilepsy, interstitial cyctisis (not too bad right now), essential vulvodynia (also not too bad right now), spinal stenosis, I have low vit D levels despite supplementing, and a few others things have been suspected by docs (like MS and huntington's with a fam history) but still undiagnosed. I think the lyme may be the root of all the evil that is going on in my body.

sorry for not stating that. Would have made sense for me to do so.
post #7 of 58
Thread Starter 
Quote:
Originally Posted by KMK_Mama View Post
I am in constant pain too...constant headache for over 4 years now. I have heard great things about the Paleo Diet and it's ability to reduce/eliminate pain. It has done wonders for my brother and my SIL and I am about to dive into it as well.
I'm not familiar with that so I will have to look into it. Thank you
post #8 of 58
I would highly recommend the Paleo diet for you as well. I'm such a cheerleader for it lately so I was hesitant to mention it.

Please look through the website I posted above, http://coolinginflammation.blogspot.com/, and check out http://www.marksdailyapple.com/ too.
post #9 of 58
Are you having trouble getting treated for Lyme? Take a look at this blog. It's written by a woman in Canada who went through hell trying to get her young daughter treated for Neurological Lyme. She ended up getting help from a doctor in Seattle and things are on the mend. Maybe there will be something there that will lead you in the right direction.

http://cleargrace.blogspot.com/
post #10 of 58
Quote:
Originally Posted by FondestBianca View Post
I'm not familiar with that so I will have to look into it. Thank you
There is a paleo thread in Traditional Foods...I actually believe there is someone on there who suffered from Lyme and currently has gotten rid of the symptoms with the diet. On many paleo web sites it lists fibro as a disease it can "cure" as well. I also have interstitial cystitis and it's something in addition to the headache that I'm hoping will get better.

My SIL reversed her polycystic ovarian syndrome with the diet, started getting regular periods and is now unexpectedly pregnant after years of infertility. (They used IUI to get pregnant with my 2 nephews) And my brother reversed his high cholesterol and high blood pressure.

Unlike you, if MJ got rid of my headache and I could get it legally I would be SO THERE. LOL :P
post #11 of 58
Quote:
Originally Posted by FondestBianca View Post
so far chronic lyme seems to be the major culprit but, I'm still in the diagnostic process. I've also been diagnosed with fibro (though I think thats just the lyme), epilepsy, interstitial cyctisis (not too bad right now), essential vulvodynia (also not too bad right now), spinal stenosis, I have low vit D levels despite supplementing, and a few others things have been suspected by docs (like MS and huntington's with a fam history) but still undiagnosed. I think the lyme may be the root of all the evil that is going on in my body.

sorry for not stating that. Would have made sense for me to do so.

I was going to ask if you had been tested for Lyme. I was also going to ask if you had ever been tested for food sensitivities. You could have those in addition to, or even due to, the Lyme. One of my more common food reactions is inflammation in my joints and back. When I stopped eating my food offenders, it went away. I've also re-tried some of the offending foods and they still cause this kind of inflammation.
post #12 of 58
lyme, food sensitivities and endocrine issues go hand in hand.

we have had the most luck with diet changes, homeopathy and flower essences. Supplements help, but they don't touch the pain. That's what flowers and homeopathy do well.

We follow more of a primal diet-paleo is too low fat for the amount of toxins we are addressing. But, getting grains and sugar out are the biggest things. For everyone I've ever worked with who has lyme.

I'm sorry you are still so uncomfortable.
post #13 of 58
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.
post #14 of 58
Thread Starter 
Quote:
Originally Posted by californiajenn View Post
I would highly recommend the Paleo diet for you as well. I'm such a cheerleader for it lately so I was hesitant to mention it.

Please look through the website I posted above, http://coolinginflammation.blogspot.com/, and check out http://www.marksdailyapple.com/ too.
Thank you for the links. Always better to go directly to the sites that those who are familiar prefer.
post #15 of 58
Thread Starter 
Quote:
Originally Posted by WantRice View Post
Are you having trouble getting treated for Lyme? Take a look at this blog. It's written by a woman in Canada who went through hell trying to get her young daughter treated for Neurological Lyme. She ended up getting help from a doctor in Seattle and things are on the mend. Maybe there will be something there that will lead you in the right direction.

http://cleargrace.blogspot.com/
Well.... yes. BUT, I had an appointment with someone who works for one of the leading LLMD's in Seattle (probably the same doc mentioned in the blog you linked) and he said that my best bet would be to research and try out natural remedies (which I'm doing). He said that at this point there is nothing they could do for me there besides reconfirm the lyme and do that research for me and write perscriptions. That doc is booked out over 9 months in advance and charges $600+ per visit. The guy there that I spoke to said seeing that doctor is more for people who are so sick they can't do the research themselves or have other medical ailments that make certain natural treatments risky or dangerous.... or for people who just have a heck of a lot of money and want a professional deciding their treatment plans.

So far I haven't seen improvement in smptoms from anything other than time and climate change. Winter was BAD and now with summer approaching it seems to be getting worse again. Cognitive and neuro problems are resurfacing with a bang again also.
post #16 of 58
Thread Starter 
Quote:
Originally Posted by KMK_Mama View Post
There is a paleo thread in Traditional Foods...I actually believe there is someone on there who suffered from Lyme and currently has gotten rid of the symptoms with the diet. On many paleo web sites it lists fibro as a disease it can "cure" as well. I also have interstitial cystitis and it's something in addition to the headache that I'm hoping will get better.

My SIL reversed her polycystic ovarian syndrome with the diet, started getting regular periods and is now unexpectedly pregnant after years of infertility. (They used IUI to get pregnant with my 2 nephews) And my brother reversed his high cholesterol and high blood pressure.

Unlike you, if MJ got rid of my headache and I could get it legally I would be SO THERE. LOL :P
My IC isn't bad right now. No telling if it will be again at some point but, right now, it's ok as is the vulvodynia. I did have a problem with chronic cysts in the past. I've suspected a few over the last couple years but, directly after going off BC I had them almost monthly for 2 years straight. That resulted in 2 years of infertility. Can't get pregnant if your egg is locked up in a cyst! I had one that was ultrasounded at the size of a large grapefruit. That bugger hurt. I always thought my cysts were from taking BC. I had a well regulated cycle prior to that and it altered that cycle. Funny that the very month I go off BC I start getting cysts. Hmmmmm. Anyway, it seems that diet is highly recomended and something I should really dig around in to see if it's a fit with everything I have going on.
post #17 of 58
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.
post #18 of 58
Thread Starter 
Quote:
Originally Posted by KimPM View Post
I was going to ask if you had been tested for Lyme. I was also going to ask if you had ever been tested for food sensitivities. You could have those in addition to, or even due to, the Lyme. One of my more common food reactions is inflammation in my joints and back. When I stopped eating my food offenders, it went away. I've also re-tried some of the offending foods and they still cause this kind of inflammation.
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.
post #19 of 58


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.
post #20 of 58
Thread Starter 
Quote:
Originally Posted by Panserbjørne View Post
lyme, food sensitivities and endocrine issues go hand in hand.

we have had the most luck with diet changes, homeopathy and flower essences. Supplements help, but they don't touch the pain. That's what flowers and homeopathy do well.

We follow more of a primal diet-paleo is too low fat for the amount of toxins we are addressing. But, getting grains and sugar out are the biggest things. For everyone I've ever worked with who has lyme.

I'm sorry you are still so uncomfortable.
Good to know about the issues with the paleo from a lymie. One of my next steps was going to be looking into flowers but theres a lot on my list, yk. So many things being throw my way and I can't do them all at once. Hard to know what to go after next. Right now, the pain is my main struggling point with the nocturnal hallucinations and waking from sleep in panic coming in a close second.

Sugar is a HARD one for me to kick. I can't do artificial sweeteners because they make skin tissue pain awful (and are just plain bad for you). I recently tried replacing some of my sugar with other kinds of natural sweeteners but I'm thinking they may have close to the same properties and cause the same problems as sugar. Clearly it hasn't made a difference either way. I'm a sweet tooth... in a serious way. It's tough to kick that when I've already limited my diet so much. It's still a work in progress. The only thing aside from the artificial sweeteners that I KNOW I'm sensative to is soy. When I first went vegetarian I replaced all of my main courses with soy products and as a result, I had daily digestion issues (I think you can imagine what they were) for an entire year before I put 2 and 2 together. I quit the soy and that issue nearly stopped all together within a week or two.
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