When I first started LCing, I felt great. My energy was better, and even the pain was gone. I thought maybe I'd found something that "cured" me, that perhaps excess carbs or wheat consumption was responsible for my symptoms in the firts place, and by avoiding those I'd be "normal". I was even contemplating what kind of work I should do if I'm truly too healthy for SSI (which is currently in its 2nd appeal.)

Well, I'm in a major fibro thingie again. I can't even remember the name usually used for these bad episodes. Physically I'm probably no worse off than I was a few months ago, but mentally I'm a mess. I thought this would be *it* and I wouldn't have to go through all this again. And now it's summer and the kids are home and I can barely keep up with everything I'm supposed to be doing. Just taking DS for his swimming lessons every day is completely wiping me out.

Plus I've got other stressors- the ex not paying child support (my only income right now!) in full because he's also out of work, my parents treating me like I'm 12 years old instead of an adult, etc. I just want to curl up into a ball and cry and cry and cry. Or go take a nap for a few hours- which is equally impossible with an awake 5yo in the house.

Flare. That's the word I was thinking of. I'm in another major fibro-flare.

Well, healing is rarely linear, at least it wasn't for me. Even though getting wheat and dairy free helped me tremendously it wasn't the entire problem. I ended up being diagnosed with ankylosing spondylitis and my doctor put me on a fairly mild medication that seemed to knock out another 30% of the pain I was having. But about every 3 months before I really cracked down on my diet and got rid of all grains and dairy I'd have some nasty flares where I'd wake up in pain in bed, have pain in my ribs when I breathed and have pain in nearly every joint.

I know you have financial issues but if it is at all possible, you might want to consider a paleo diet, people with arthritis, autoimmune diseases and fibro often respond to it very well. Have you ever had a thorough blood work up from a rheumatologist? You could have some underlying autoimmune disease causing this problem.

Anyway, I remember how it felt and I wish you luck in finding your answers and your health. Just hang in there and try to eat the best diet you can because I think that is most of the battle.

My husband has severe dietary issues, most particularly gluten. He is now on an arc of a two and a half year learning curve about how careful he needs to be. I ate a sausage McMuffin with egg (removing the muffin, of course) the other day after an ER visit and went home and kissed him even though I was worried about it. I was right to be worried. He has had a major episode for the last 4 days - it's unbearable. Nobody in my family eats gluten even when we are not with him and it is not allowed to enter the house at all. He also had to give up many more foods than he ever thought he would have to. The change at the beginning after going wheat and dairy free was striking but keeping on top of it and eliminating all sources of the problem is an ongoing issue.

Don't give up - it gets better with time and the episodes get more infrequent and managable. I can't recommend supplements due to allergy issues, but eating the best food possible will really help you.

Janine

Yup, I've been seeing a rheumatologist regularly for several years and had lots of blood work done repeatedly. My dr has come to the conclusion that I don't have Lupus or Lyme disease after the tests for those coming back negative repeatedly for over a year.

I guess I should look at paleo eating- already I'm avoiding cow's milk dairy except for butter and cream, but I'm still including sheep milk feta and goat milk yogurt (plus whole goat milk in limited quantities.) I pretty much cut out all grains when I started LC, though I do have about half a slice of bread once or twice a week.

What else does paleo restrict?

Ugh. I went to physical therapy for the first time today, and my shoulders feel even worse than they did before. The electrical stimulation, heating pad, and massage with something that felt like icy-hot felt good, but then she made me do a bunch of exercises that were really rough on me (though appear very simple and low intensity for a "normal" person) and now I feel pretty achey.

You might want to get the book "The Paleo Diet". Basically it is limited to meat, eggs, nuts, veggies and fruits. No grains of any sort, no dairy. We argue back and forth about things like olive oil and vinegar but most of us have at least a few (generally non-grain or dairy) foods we won't part with. I call myself about 85% paleo, I still use splenda and vinegar and things I don't think cause me any ill-effects.

The folks with AS have found many of them respond to no-starch diets. Personally I think it was grains and dairy causing many of my issues.

Fasting or Intermittent fasting might help with inflammation too.

What's AS?

Ankylosing spondylitis. It shows up as fibromyalgia often on women, but full-blown it is an autoimmune disease that causes your body to make mistakes when it repairs bone or cartilidge. It can cause your spine or hips to fuse so you can't bend. Fortunately mine is very mild. The most tell-tale symptom is that you get sore lying in bed and the soreness goes away after you've been up and moving around some.

See, I'm not sure that I have any inflamation. Normally, I get muscle pain and severe fatigue with no inflamation at all- which is why anti-inflamatories do nada for me. I say "I'm not sure" because I'm incredibly sore from PT today, and it's possible I'm slightly inflamed from overuse today (yup, trying to do 10 reps each of some very light exercises caused me quite a bit of pain. )

I also do REALLY poorly with fasting- I get faint and dizzy very quickly. My biggest problem right now is that I have to schlep DS to the pool every day from noon til 1PM and I do very poorly being out in the summer heat.

I tried to take a nap this afternoon but I couldn't get comfortable- the pain in my shoulders kept me awake. The same thing happened 45 minutes ago when I tried to go to bed. This is NOT good! I may have to quit PT if this happens again on Thursday.

What a vicious cycle. I'm in pain due to fatigue, but I can't sleep due to the pain. Nor can I take any more drugs than I've already taken- I took my ultram a while ago and put capsicain cream on the sore spots but I still can't get comfortable.

Are they muscle spasms? I used to get those too. In fact, they came back when I had a few slices of cheese a couple weeks ago. Ugh! I've been off the dairy again for a week now and I'm fine. I never had made a direct association between the spasms and dairy before this though.

Do you get your blood test results when you see your rhuemy? I always look at my CRP and IL-6, they're very good indicators of inflammation. Mine are always low though. However, anti-inflammatories always help my pain too. So perhaps they're only indicating a certain type of inflammation.

No, not spasms. Just constant aching.

I called today to cancell tomorrow's PT appt. Pushing myself when I'm flaring is counterproductive.

Have you thought of trying some vitamin D? Vitamin D has helped many people with fibromyalgia. It's especially good for bone pain where a cause cannot be found.

Oh Ruthla, I am so sorry you are going through this! (I am newcastlemama from mothering forum ) I have Lyme and when I get stressed I get achy again too. I second a paleo-type diet. I will occaionally have rice, corn, or beans but most of the time I stick to the simple meat, produce, nuts, and fats way of eating.

Have you totally cut out gluten? I had some licorace the other day and two days later I was so achy and tired...it had wheat flour in it...who knew!!!!! Diet is such a big thing for me feeling well...and trying to stay calm, which can be difficult in real life.

Jen

No, I haven't totally cut out gluten, though I'm trying. Do I need to cut out all grains or just wheat? I'm trying to figure out if I could make bread for Shabbos out of oats or rye, or if I should just skip the bread entirely (which is questionable from a religious standpoint.)

I've been feeling lousy for a couple of weeks now, and I'm getting tired of it. I'm also craving carbs again- not sugary stuff either- what I'm craving are things like beans and brown rice.

I know it would be good to completely clean up my diet for a few weeks, and cut out grains and all dairy, but I'm hesitant to cut out the dairy products that I've found do agree with me. I'm bored enough with my diet, and I can't see cutting out butter (what else do I cook my eggs in that doesn't taste gross?) or sheep milk feta or soft goat cheese (though I do limit cheese to once or twice a week.)

I'm also kind of bummed out because I'm now at the weight that I've maintained since my 2nd pg- I haven't been slimmer than this in 11 years, and I seriously wonder if it's possible for me to lose any more weight.

I'm also exhausted because I had to get up early this morning for my SSI appeal hearing, so I'm kinda worried about that (though releived that it's over) plus I'm just plain tired from geting up 2.5 hours earlier than normal, and I can't nap because the 5yo is awake.

If the goat/sheep dairy agrees with you then I would keep it in. Maybe just try cutting out gluten containing grains/items for few weeks and then do a challenge. Here is a list of stuff with gluten:
http://www.csaceliacs.org/gluten_grains.php

I hope you feel beter soon,
Jen

Oats, rye, barley, wheat, spelt, all contain gluten and should be removed if you're trying a GF diet. Also stuff like beer, and soy sauce and sometimes salad dressings (read the label). If you eat out at all, beware of sauces, most are thickened with wheat.

Here's a link to a good list:
http://www.celiac.com/st_main.html?...-58107122012.13